Raquel's Spectrum Disorder

"Mom. She Talks To Us. Isn't That All That Really Matters?"

2012-01-09T12:50:00.001-08:00

I am very happy to report that two of our annual meetings are behind us for another year.

First, last Wednesday we had our annual IPP (Individual Program Plan) with my Regional Center rep, Heather. This is where we basically discuss where she's at developmentally and behaviorally, how school is going, changes in services & medications, health issues, etc. I actually look forward to this one. Heather is a huge support, and jumps through hoops to make sure I continue getting the services I'm entitled to while dealing with forever changing budget cuts. Not an easy task. The main change in services that goes into effect next month is a decrease in my respite hours. Instead of 16 hours per month, I now only have 10 hours. Bummer. But what can you do? Nothing but be thankful that I still have 10 hours.

Since I'm the one taking care of Raquel on a daily basis, it's sometimes hard for me to notice the gradual changes. But once I sat down with Heather and we started comparing last year at this time to the present, it seemed like night and day at times. Last year we had a behavior plan in place, the goal was to keep tantrums and self-injurious behaviors to a minimum of 3-4 per week. This year, we don't have any behavior goals because she doesn't have the outbursts - unless caused by her seizures or being sick. And there is nothing self-injurious at all. Those days are long gone. I remember being told way back by my ABA Team that there would be a light at the end of the tunnel in this respect. Now we are actually out of the tunnel and living in the light.

One thing we did discuss was my ongoing concern regarding safety issues. I'm not any more comfortable in this area now than I was a year ago. Because of this, Heather has recommended in-home behavior therapy again, to help me learn how to teach Raquel these things. Since Raqi has been around so many people due to all of her therapies, hospital visits, respite workers, etc., she really doesn't know what a "stranger" is. In this day and age, it is very important that she learns this. She has never just walked up to someone but I feel she would be trusting of too many people should a certain situation arise. We will also be working on street safety in regards to cars, animals, etc. This won't be happening anytime soon - we're at least 2-3 months out - but I'll take it. And it looks like our last behavior therapist, Mike, will be assigned to us. Yay! I really like him, and he was able to talk to my Mike guy-to-guy, which was a good thing. I'll just need to remember to add him in my phone with his full last name. I've answered my cell phone, "Hey Babe!" a few times, and sent text messages by mistake, once asking him to bring home dinner. He didn't. :)

The following Thursday, I had my annual IEP with the school district. This is the one meeting that I absolutely dread - where everyone basically doesn't believe me and thinks Raquel can't do any of the things I say (or previous therapists have said) that she can do. It's quite annoying. I've posted before about how I don't get along with a couple district reps, have had them replaced, etc. Sadly, the vast majority of times, the people sitting in front of me don't really feel Mother-Knows-Best. That bothers me so much, not because I buy into it - which I never will - but because I think about all the other families that DO. As a parent of a special one, all you have is hope, and I absolutely REFUSE to let anyone, no matter what their job title, take that away from me.

The IEP actually went pretty well. It was nice seeing the APE & OT therapists that I haven't seen since her kindergarten transition meeting over 6 months ago. The general education teacher was dismissed almost immediately because I didn't have any questions, and the behavior therapist attended but wasn't really needed because we no longer have a behavior support plan in place.

The one person I had the most questions for and looked forward to getting the most input from was Jane, her speech therapist. I have met Jane on several occasions when dropping Raquel off at school. She's extremely knowlegable and spoke to me in length about why not to pursue sign-language, the positive effects of PECS, etc. She's even taught to some degree at Gabby's school. Unfortunately, Jane had some kind of scheduling conflict and could only stay 30 minutes. She started the IEP without everyone in attendance, was obviously very rushed, and actually - after working with Raquel less than a handful of times in probably not the best conditions - started out by telling me, flat out, that she never thought Raquel would ever be able to verbally communicate. When I told her I completely disagreed, she said I was entitled to feeling that, but that was her professional opinion - and then just went on about starting up a PECS program. Got to say, I wasn't expecting that one. And I was pretty disappointed. Not disappointed because I couldn't take what she was saying. I just thought that it came from left field, considering she doesn't even know her. She doesn't know how stubborn Raquel is, and that if Raquel doesn't know someone, she tends to be a bit shy and takes awhile to open up. But maybe she doesn't have the ability to be "shy" in her professional opinion, either. The rest of the IEP was implementing new goals, discussing her in-home schooling, and signing paperwork. Nothing major at all.

That night, after I put Raquel down to bed, Gabby asked how the meeting went. She's gone with me to them before and knows the drill. If you say the word "IEP", she typically rolls her eyes. When I told her what Jane said about Raquel never talking, she got a little quiet and sat there for a minute thinking. Then she said, "Mom. She talks to us. Isn't that all that really matters?"

Yes, Gabby, it is. And thank you for reminding me of that.

And Then - A Shellfish Allergic Reaction

2011-12-21T13:23:00.000-08:00

Overall, Raquel has been doing really well since my last post over a month ago. I am going to stop posting about how seizures are reducing because everytime I do, they return. They have definitely improved since taking her out of school but are still very much a part of our reality. Fortunately for her (us), they are manageable right now. I hear from parents all the time that have kids who experience 10, 20, 50+ seizures a day. I cannot imagine what that might be like. Actually, I think I can, and that's why it is so humbling. Who am I to complain? I can't and don't. I just roll with it.

Before I update what has happened since my last post - a lot of good things! - I just want to back up a couple days...

Sunday morning, Raquel had one of the worst seizures in a LONG time. She started to turn blue (yes, I freaked out), and Mike told me to call 911. This seizure lasted probably 3-4 minutes. As soon as I grabbed the phone to dial, she came out of it and her coloring got better. I then gave her all of her regular meds along with 1/2 extra Keppra pill. The previous night I don't think I got all of the meds in her, so her medication levels were probably off. That's why I think it was so bad. Besides being very tired, she had a pretty good day.

Then on Monday night, Mike BBQ'd some lobster & steak (thank you, Mom & Dad!). I never give Raquel any shellfish, mangos, honey, nuts, etc. - any possible allergic reaction triggers - so I made sure not to give her any lobster. After dinner, she had her bath and I noticed that her eyes became very watery, itchy, and bloodshot. I immediately took her out of the bath and got her dressed. Then her face started to swell up. Apparently what happened was when Mike took the lobster off of the BBQ, he set it on top of the steak. Although the amount of "drippings" she must have consumed from that was very slight, she obviously cannot tolerate it. I am so thankful that I didn't give her a little piece to taste like I wanted to. That would have easily required the use of her Epi-Pen, or put her back into Children's Hospital, a place I love but don't wish her to be admitted to again any time soon. Sometimes you just find out things the hard way.

So, after Monday night's events, I've promised myself to be a lot more diligent about making sure I have a "safety pack" for Raquel - and all of us for that matter. I have to make sure I have the Epi-Pen, the Benadryl, the Valium if cluster seizures happen, not to mention a supply of meds. It's so easy to get in the car and run down the street to the grocery store and not think another thing about it. But a lot can happen when you are outside of your home, even if it's just a mile.

As far as the Keto Diet goes, we've pretty much implemented it, however, I've been unable to reach our nutritionist since she gave me the week 1 meal plan in November. Don't know what the deal is - she couldn't have stressed more about communication being key - but maybe the holidays just got in the way. I'll try again come January and really want to move forward with this. She still has applesauce to take her meds, and I'm still letting her have a bit of juice, but besides that, she has the allowed low-carb breads, shirataki noodles instead of pasta, cauliflower mashed potatoes, etc. She doesn't seem to be deprived or missing all the carbs she was previously consuming. And we are just keeping favorite items - like the sweet potatoes - out of the house. I would feel really bad making them for the rest of us and then simply not giving any to my rock star.

It is still very much a learning curve, and to cook things is a real adjustment. The weighing, measuring, calculating makes my head spin at times. Math was never my favorite subject in school, so that's not helping matters any. It is making Gabby want to study harder in math. She always says that she'll take care of her sister if something happens to me, and I don't doubt that for a second.

I am very happy to report that her in-home schooling has started. I'm even happier to report that her teacher is Miss Crystal - her actual kindergarten teacher!! Having her here working with her is a dream come true. It is so nice to see Raquel respond to her in a positive way and for Crystal to see a whole different side of Raquel. We've already re-defined the IEP goals, and I'm actually looking forward to the annual IEP on January 5th because Crystal will be there and will be able to provide input that the district will listen to.

Crystal in the house daily is so much different than in-home therapy was. I don't have to sit in with her unless I want to, and she works with her on academic skills and doesn't try to get her aggitated to provoke behaviors. :) We've discussed implementing a PECS program as well as a transition station, so that will be something to work on come January. Besides the academic skills, Crystal also works on speech and occupational therapy, and I just got a mini-trampoline for them to use during music time, which will help strengthen her leg muscles. But shhhh, it's from Santa. :)

We are also checking into the iPad program that has been very successful with some Autistic kids as well as those that are lacking communication skills for other reasons. It's been shown that it allows kids to effectively express their needs/emotions by touching a button. I would love to have Crystal be able to incorporate this in with her teaching.

Overall, I'm very pleased with how things are going. It's still a day to day thing, but I'm happy to say that we are experiencing more positive days than negative ones.

Keto Diet Still Pending

2011-11-10T13:06:00.000-08:00

I really had every intention of starting Raquel on the Ketogenic Diet on November 1st as planned. But I can honestly say that gearing up for this thing is taking a little bit more work than I anticipated. Yes, I've got the scale, the books, the list of foods - and meal plans for the initial week, which are kinda hard to decipher. But oh my gosh!! There's just so much to take in and change. I'm very overwhelmed right now about how to deal with the process because the household is going to be turned upside down once this goes into effect.

So, let me just back up a bit and post a couple Halloween pictures. This year, I took the girls to the local mall for trick-or-treating and have to say that it was a great experience. Safety wasn't an issue, the weather wasn't a factor, and we could've really made a night out of it by going out to dinner or bowling or something once they stopped handing out candy.

Here's my happy little pirate. Arrr!!!

And her big sister, the genie.

Good times. We continue to make the best of things because, to quote a special friend, "that's how we roll."

Okay, back to the diet situation. For starters:

The meal proportions are large and she has to eat everything. Raquel likes to eat small frequent meals, not so much 3 big ones plus 2 snacks. She can eat here and there all day long. Not on this diet. Everything is weighed, calculated, and measured.

She loves her juice. I dilute it with water, but this is no longer a consumable item. Water is the preference, but who seriously wants to drink nothing but water all day? - and I'm a huge water fan. And water is critical in this diet to help prevent the development of kidney stones.

I'm having issues with using artificial sweeteners. She can have a Diet Sprite but no apple juice? I get the idea behind it, but don't particularly agree with that being a beverage of choice. She can have some sugar free flavored water, but again, we're going back to the artificial sweeteners. I think the carb-free Stevia is going to be my new friend. I just need to figure out how to use it.

The medications in pill form are a challenge. I'm used to squirting the liquid meds in her mouth with a syringe type thing. The pills taste bitter and the only thing I can do to get them in her is to hide them in applesauce or yogurt - which are, of course, two more items she can no longer have. Fortunately, I'm getting some good feedback from my Keto support group on ways to do this. It'll just be a work in progress. If I keep her on liquid meds, that does something to her carbohydrate load and more calculations are required and blah, blah, blah - I'm going to make the pill thing work at this point.

I still need to get the sugar free multi-vitamins, shampoo, lotions, toothpaste. I never realized sugar was in all this stuff until I started looking for sugar-free brands. Sugar needs to be in shampoo why?

Just got the urine sample testers today. But there was no need for them before because there's really no reason to test her since we haven't implemented the diet.

On the positive side, she has suddenly started liking eggs. Fried, scrambled, poached, you name it. She never would touch those things before. I've started to reduce the amount of "bad" carbs she is consuming and replace them with more preferred ones. I've located steel-cut oatmeal and have an idea of how to cook them. She continues to enjoy the tofu Shirataki noodles, which she'll now eat for spaghetti - as soon as I figure out how to make the keto friendly tomato sauce. :)

Now that she is on pill forms of her meds, it really is nice. I only have to give them to her twice a day instead of 4 times. There's been an adjustment period - she gets tired earlier than usual because she's getting a full dose in the morning and it's not split up - but once I give it to her at breakfast, I don't have to worry about it until bedtime, which is a really great thing. I started her on the pill format on Monday - and we've had 3 seizure free days. I'll take it. I'll take any day without a seizure. Any afternoon for that matter because they've been pretty frequent these days.

Hoping to start in-home academics/therapy during the intial diet phase very soon. That's a paperwork thing at this point but am pretty sure it'll happen. Raquel has her next follow-up with her neurologist on January 23rd.

Thanks go out to the best friends and family in the world for your constant love, support, and encouragement. It means the world knowing you are there for me, give me strength, and don't judge. You all know who you are, and you rock. xoxo

Keto Diet Starts November 1st

2011-10-22T11:55:00.000-07:00

We met with the Ketogenic Nutritionist this last Wednesday to discuss the diet specifics in more detail. Vanessa still recommends the Low Glycemic Index Treatment (LGIT) part of it, but it is definitely a lot more restrictive than I originally thought it would be. Raquel fortunately won't have to be admitted to the hospital for the supervised fasting in order to get the ketones in her optimal state. Instead, this will be done at home, and there is no true fast - we simply begin removing (A LOT) of certain foods from her diet and replacing them with new ones. I'll need to test her urine twice per day, weigh and measure food, monitor her weight, and keep very diligent records of everything.

The reason we aren't starting the diet before November 1st is because there are things that need to be put in place before then. For starters, I need to get food scales, measuring cups, books, urine testers, etc. I also need to take her back to the hospital for another full bloodwork panel, and Vanessa needs to discuss everything with Dr. Mower. The nutritionist and neurologist work side-by-side with this. I also need to get all of Raquel's medications in pill form. She can no longer take liquid meds of any kind due to the glucose content in them. I will need to purchase "keto friendly" toothpaste, soap, lotion, shampoo, conditioner, detergent, etc. I can honestly say that I pretty much thought I would leave the consultation with a list of foods she could and couldn't have, how much of what, and be done with it. So not the case. This is definitely a HUGE commitment. But, if she responds well to it and seizures decrease and medications can be removed, it will be well worth the effort.

And then we discussed some of her favorite food items that must be entirely removed: pasta, sweet potatoes, baked potatoes, corn, bananas, cantalope, kiwi, pineapple, and, gulp ... her beloved watermelon. And no fruit juices at all. Thankfully, she can still have milk, yogurt, cheese, beans, pears, grapes, and most vegetables. And, she can have pretty much all meats. She does like the tofu shirataki noodles so I can always make spaghetti for her with that. And there is something called "miracle noodles" that I'm told makes a really good macaroni-n-cheese. Basically any carbohydrate she consumes must have a glycemic index of less than 50. And I'm discovering that most of what she east is well above this.

Vanessa says that it typically takes about 3 weeks on the diet before before you are able to detect ketones in the blood and urine, which is why I will be testing her daily. Until Raquel reaches her state of ketosis, Vanessa will be sending me meal plans and snacks that she wants me to consistently use for this initial phase. Once in ketosis, we can begin adding more foods to the mix and we'll have a bit more flexibility. She will have 3 meals per day, including 2 snacks. These need to be given on a routine schedule with not much fluctuation in the times. She will also need to take vitamins and supplements to keep her healthy and strong.

There's a lot to learn, a lot to take in, and a lot to gear up for. My biggest concern is Mike. Raquel always wants to eat what her dad is eating, so a little nibble here and there from his sandwich or plate like he's used to giving her will no longer work when the food scale comes into play. I have to monitor every morsel she eats and drinks and not stray from that. One little piece can throw off her ketosis. This basically means I will need to meal plan, meal plan, meal plan - and have everything measured in its containers and once they are empty, she's done for that particular meal. And then make sure Gabby & Mike get the importance of that.

I will pretty much be dealing with Vanessa on a regular basis. I see her again in mid-December, which she is predicting will be about six weeks into the diet - and three weeks after she has reached ketosis. More blood work will be done for evaluation at this time. I have committed to try this diet for a 3 month initial period. We should be able to notice changes by this time. If she appears to be responding in a positive way, we will keep her on the diet for two years. After the two years, the diet is weaned slowly.

On then Banzel side, Raquel seems to be responding pretty well. No seizures since I started gearing up to Dr. Mower's requested doseage. That's only been a few days, but I'll take it. It does appear to throw her sleep off - if she naps at all, it's very brief, maybe 20 minutes. But I'll take that as well. And she's staying up a bit later than she usually does. Hopefully this is only an adjustment period. She also has developed a rash, which I'm told is okay for this med. As long as she doesn't end up for a week in ER, I'm happy with it at this point. :)

As far as her school goes, I have decided to keep her out and plan on doing so until after the first of the year. Now that this new diet is starting up, and the holidays are approaching, I feel it is in her best interest to stay out of school until we can tell how she responds. If she gets sick, ketosis can also be thrown off, so that is another concern I have with the school - not to mention her getting a cookie here and there, which would inevitably happen in her class.

I'm happy as I can be right now. And I plan on cooking all of Raquel's favorite foods this week. November 1st will be her very soon. We'll see where our journey takes us after that. But I'm thinking it's going to be onwards and upwards. Again, I have big hopes for my girl!

The Oak Tree

2011-10-07T13:16:00.001-07:00

This was shared by another Mom going down a similar path as me, and many, many others. Thought it was worth posting.

The Oak Tree
by Johnny Ray Ryder Jr

A mighty wind blew night and day
It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark

But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke
How can you still be standing, Oak?

The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs and make me sway

But I have roots stretched in the Earth
Growing stronger since my birth
You'll never touch them, for you see
They are the deepest part of me

Until today, I wasn't sure
Of just how much I could endure
But now I've found, with thanks to you
I'm stronger than I ever knew

And Then There Is Banzel

2011-10-05T13:42:00.000-07:00

It took over a week to get the medication since Dr. Mower added Banzel to Raquel's anti-convulsant schedule. After we spoke the last time I posted, he immediately called the prescription in. I was told by the pharmacy the next day that I was denied the medication, and it went back and forth, and back and forth between my health insurance company and Dr. Mower's office for about a week. My insurance wanted Dr. Mower to substitute Banzel with a less expensive medication. Remember, they start with the cheapest drug possible and then add more expensive, more appropriate drugs in the mix after unsuccessful trials of the cheap one are determined to be ineffective. Yes, just my opinion but I've been dealing with this nonsense for several years now. Dr. Mower said that if he wanted Raquel on a different medication, he would have prescribed that. Just more pharmaceutical/insurance drama. But Dr. Mower holds his own. My kind of doctor.

I got a letter in the mail yesterday from my health insurance that stated the reason for them denying Raquel the Banzel: "After an evaluation for medical necessity, your request for Banzel cannot be approved due to an inadequate trial of Lamotrigine (Lamictal)."

Really?? I thought 2+ weeks on Lamictal was pretty significant - especially considering she ended up in ER and at Children's Hospital for a week due to the life threatening allergic side effect called Stephen Johnson's Syndrome. I guess they had no problem paying the hospital bill and want to do it again. Where's the logic here?

Today, I picked up the Banzel and am hoping and praying she responds well to it. It's one of the newer, more expensive mediciations out there. I have a journal and am documenting everything - all behaviors, eating changes, mood changes, etc. She had her first dose this morning at 11am, and I did notice she got really tired about 30 minutes later, and her walking became very unstable. I'm sure there will be an adjustment period. She is still on her regular Keppra schedule, the Banzel is in addition to this, so it's typical for her to experience different side effects until her body adjusts. At this point, I'm just hoping for the best. She really is such a trooper.

Unfortunately, due to the increase in seizure activity, particularly happening at school, I've chosen to pull her out of kindergarten until she is more stable. I spoke with her teacher yesterday and, if all goes well Banzel wise, will try to start her back up in class this coming Monday, October 10th. I'll just have to see how the rest of the week goes. But I've got high hopes for my Rock Star. :)

More Medication Changes

2011-09-26T15:16:00.000-07:00

I spoke with Raquel's neurologist this afternoon. He obviously wasn't happy with what I was reporting, and feels that Keppra is no longer working at its full effect due to the increase in Raquel's seizure activity in such a short amount of time. Because of this, Dr. Mower put in the order for another anti-convulsant called Banzel. Side effects are like Keppra - on the light side - and nothing that should put her back in the emergency room for a week like we experienced with Lamictal a few months back.

The reason he wants to add this new medication instead of waiting until after the Ketogenic Diet is implemented next month, is because he says that the diet can take several weeks before changes are noticeable, and he did not feel, because of such an increase and them occuring out of nowhere (not just when she's stressed or overly tired anymore), this was the route to go. If we feel she is responding well to the diet, Banzel will be the first drug to be removed.

I was also instructed by Dr. Mower that if more head drop seizures occur, and are frequent like they were in the car the other day, I need to immediately give her the high dose of valium and to treat these exactly like I would if she was having "cluster" seizures.

In the meantime, since she'll be on the Low Glycemic Index Treatment diet to start with, I'm going to start removing the bad carbs she's been consuming, and replace them with gluten free comparable items. There are so many more products readily available now than when Raquel was previously on the GFCF diet, this will be much easier to do.

Head Drop Seizures

2011-09-23T11:48:00.000-07:00

The majority of Raquel's seizures are called tonic seizures, where she'll suddenly get stiff as a board, raise her arms over her head, her face will grimace and typically get very red. Sometimes her eyes will start to roll back, and she becomes very unresponsive. But there is no visible shaking during these tonic seizures. They last anywhere between 30 seconds to a couple minutes from start to finish, and afterwards, although tired, will usually just go about her business. I do pretty well with these and don't tend to freak out too much anymore. Gabby may say different...

Then there are the myoclonic ones, where she has a jerking or twitching of a muscle group - almost always her arms. These are brief, and she responds well afterwards for the most part.

She also has some called tonic-clonic seizures. These are the ones that are referred to as "grand mal seizures", where the "blue factor" can come into play, and I totally freak. Fortunately, these are not as often. She'll start out getting all stiff (the tonic phase), and then the arms and legs jerk rapidly and rhythmically (clonic phase). Her lips and/or cheeks sometimes begin to turn blue due to lack of oxygen, and she often loses bladder control. These can last up to 3 minutes - for her - and consciousness returns very slowly. When she does come to, she appears very drowsy, disoriented, confused, and sometimes aggitated. She always wants to sleep. Gabby handles all of these seizure types like a pro.

Earlier this week, after having one of her tonic-clonic seizures, I posted about atypical behavior she was showing afterwards and that she had these weird head jerks. These are unfortunately head drop seizures.

This morning on our way to school, Gabby kept looking at Raquel in the backseat and I could tell she was concerned about something. She said Raquel started to drool a bit - which is not normal for her unless a seizure has occurred. Then she started dropping her head. She must have had 20 head drop seizures in the 10 minute drive to her school. At one point, Gabby was timing them at happening every 12 seconds. I, shockingly, handled these pretty well. I guess it's because the duration is so short - just a few seconds or so. But this is the first time I have ever seen Gabby get visibly upset. She started crying and climbed in the backseat to hold her sister and kept asking her what was wrong and if she was okay.

I immediately did a u-turn at Raquel's school so I could take her home and watch her. She was done with therapy for the week and Friday is just a play day for her, so she wasn't missing out on much except for social activities - and me being able to go to work. But I felt it was best to keep an eye on her.

I don't know why she has developed these seizures now. Nothing has changed medication or diet wise. Perhaps it's just another side effect from the medication. I am so thankful to have joined these online support groups, and am actually looking forward to meeting with the Keto Nutritionist to see what other options are available.

Keto Nutritionist Appointment Scheduled

2011-09-20T15:48:00.000-07:00

I spoke with Vanessa, our Ketogenic Diet nutritionist, and have scheduled an initial appointment with her for October 19th. This will be a 2 hour appointment and Raquel is required to be there so she can evaluate her. She has also asked me to read a book (I already bought it), and search several websites and blogs that she gave me to familiarize myself with the diet more.

Based on our conversation and the questions I've answered, she is initially suggesting that we implement a Low Glycemic Index Treatment (LCIT) form of the Keto Diet, which she said is the least restrictive. She recommended LCIT mostly because Raquel isn't having seizures multiple times per day and thought we should start at the lower end of the diet which allows for more carbs.

She did say that she has treated all kinds of kids, some who didn't respond well to the Keto Diet, that developed behaviors, regressed, etc., to others who are completely off all medications and have been medication and seizure free for years. She said this is completely an individual thing and requests that we consistently stay on the diet for 3 months. At that point, she (we) will be able to tell if it's working or not. After 3 months, if we feel she is adjusting to the diet, meds will start being reduced and we go from there.

Obviously, I will get a bunch more info about the process come October 19th. In the meantime, I'll keep everything as is diet and medication wise, and start doing my homework.

In A Lack Of Better Words ... Seizures Suck

2011-09-19T14:00:00.000-07:00

I wish I could say that Raquel's seizures have improved, that's not the case. They have increased quite a bit - and I'm getting very concerned because I can't seem to identify what is triggering them. Simply being overly tired and overly stressed isn't working for me anymore.

She had a pretty good week in school last week, a couple mild seizures again in class, but nothing to the degree where I had to go pick her up. Friday I kept her home from school because she was sick - one of the perks of being back in school as everyone knows - and then I decided to keep her home again today because of the seizure activity yesterday and then again early this morning.

Yesterday's seizure pretty much came out of nowhere. She had a good morning, appeared to be feeling much better (from what I call the ace in my pocket - Frankincense & Myrrh Cold & Flu Prevention Homeopathic Rubbing Oil. I rub 10 drops to each foot at night before bedtime when symptoms start, and, wah-lah, it boosts immunity, and it is all natural.) We did errands in the morning, had lunch and a bath, had her meds on her regular schedule. When I was dressing her after the bath, she got really stiff in my hands and her eyes started to roll back. I immediately layed her on the floor - and, of course, called Gabby. Her face turned red and she began to shake a bit, but remained very responsive to her name and would even follow Gabby's eyes back and forth to keep looking at her.

What happened after this seizure was completely different and concerning. After she "came to", she rolled over on her stomach, which wasn't typical. Usually she gets up and walks around like nothing happened. Yesterday, she layed on her stomach for a minute, still shaking briefly, and when she finally was able to get up and walk around, her head would drop and twitch and she'd lose her balance. This happened maybe 5 times. I'm assuming this is what parents are referring to as head dropping seizures. Not sure.

Last night she slept soundly, and I had every intention of taking her to school this morning. But just as I was getting her changed into school clothes, she checked out on me again, but very briefly. I thought it was best to keep her home and let her rest some more. My respite worker thankfully came so I could go to work, and when she took her on her usual walk, she had another seizure in the stroller. She then slept off and on until I was able to get home later this morning. So frustrating.

Dr. Mower has talked to several neurologists and has reviewed Raquel's medication therapy and tests/results with them and again wants me to meet with the Ketogenic Diet Nutritionist. We've been playing a bit of phone tag, and am waiting to get my initial appointment scheduled. Although I'm very concerned about this diet - from what I've read it's similar to an Atkins thing and exactly the opposite of how I cook - most of the people from the Keto support group report amazing things. I spoke with a mom today whose kid has been seizure free since starting the diet in the last year and is also no longer on any medications. As much as the diet concerns me, I'd much rather, at this point, try something like that instead of introducing another medication and dealing with more harmful side effects. Hopefully I'll get the consultation scheduled soon and can make decisions from there.

Plugging Along

2011-09-06T13:24:00.000-07:00

After Raquel's seizure in kindergarten on her 3rd day of class, she had two more in school at the start of the following week. I assumed the initial seizure was due to her meds being out of whack, so I was extremely diligent about making sure she had all of her doses in her at pretty much the same time of day after that. And she remained seizure free at home.

I was surprised last Monday when they called me shortly after I dropped her off. The nurse told me she had a seizure during her initial circle time, but it wasn't as bad as the first one - she didn't turn blue at least - and by the time he got to her classroom, she was up and around and even having some breakfast. I chose to keep her there in class and see how she did. Besides being tired and falling asleep off and on in the car on the way home, she seemed okay. Tuesday's seizure was pretty concerning, lasting far longer than they do when she has them at home, and although she thankfully didn't turn blue again, her complexion did change and she was a bit out of sorts. I immediately went and got her. She fell asleep on the way home and then slept and slept off and on for the rest of the day and then all through the night.

I didn't sleep much last Tuesday night, was concerned about what was triggering these things if all her meds were in check. I knew she wasn't overly tired because she seemed to have really caught up with her sleep, and she definitely wasn't stressed at home. I was just at a loss. When I dropped her off on Wednesday, I left in tears. I know that made the teacher feel bad, but part of me wanted to sit in the parking lot holding my cell phone waiting for Nurse Brian to call me to come get her. Instead, I needed to go to work. Thank you, Terri, for coming in my office and letting me cry on your shoulder. It helped.

I can't begin to describe what it feels like having a non-verbal child who cannot tell me what is bothering them, who is unable to use sign-language due to lack of fine motor skills. It is a constant guessing game. I do not know what was stressing her during class, if that is what was occuring. Maybe it was stress due to transitioning from preschool to kindergarten. I don't know. And I still don't. But when I picked her up last Wednesday at the end of class, I was told she had a great day. And she hasn't had a seizure in school since. I know that has only been 4 days if you count today, but I will take it. The cup is half full, right?

I have a call in to Dr. Mower, at Nurse Brian and the school district's request, to put a seizure control plan in place. They want her neurologist to specifically document what he wants them to do and when to do it when a seizure takes place, ie. when to administer meds and what kind, when to call 911, etc. I'm waiting to hear back from him. I did hear back from the Ketogenic Diet nutrionist about scheduling an initial consultation. I just haven't wanted to call her back yet. :)

Here is Raquel in class, happily ready to get started in circle time.

Me and my girl waiting to join up with the rest of her class coming from the bus stop. When I've walked over by her school on weekends, I would intentionally run up and down all the stairs just to get some extra cardio in. I no longer like them. And there shouldn't be that many. Really.

Gabby proudly giving Raquel a "Big Sister, Little Sister" necklace.

I think Raquel liked it. They continue to have a very special bond.

Let's see what this week shall bring...

And on the 3rd Day of Kindergarten...

2011-08-24T13:19:00.000-07:00

... a seizure. I was at work for less than 5 minutes when I got the emergency call to go back to her school. I'm told it lasted about a minute and she started to turn blue. The nurse was obviously called and stayed with her until I got there. I can't say I'm shocked that she had a seizure - she has been fighting me with the meds for this last week something fierce. This morning when I dropped her off, she must have spit out half of her dose. It's been impossible lately to see exactly how much she is truly digesting. She's so over getting liquid meds 3 times a day, and I can honestly say that I'm so over having to give it to her.

When I picked her up, she appeared fine, coloring was great, just seemed a little tired which is typical. They said she ate some breakfast and was up and walking around before I got there. I had the choice to leave her at school but chose to take her home to get more meds in her, just in case. And, of course, I called her neurologist.

Dr. Mower put in a prescription for a tablet form of Keppra, which I think she will take much easier. The Lamictal she was on - before she developed the life threatening rash - was awesome. I could just plop it in her mouth, or in a spoonful of applesauce, and it was a done deal. The liquid stuff has been increasingly difficult.

Dr. Mower also put in a request for me to see a dietician to discuss the Ketogenic Diet, which I've been against since he first mentioned it to me. He's spoken to other neurologists about Raquel and her experiences, and they think this is something I should seriously consider pursuing. Sigh.

On a positive note, Brian, the nurse, took my generic Benadryl so all that is settled. He is a really great guy and I like him a lot. And I also like her teacher and the aides. Everyone seemed to handle the situation just fine.

Let's see what tomorrow brings, shall we?

Kindergarten!

2011-08-23T13:31:00.000-07:00

I can't believe Raquel started kindergarten yesterday. She did good, had pretty much an okay day and seemed to adjust for the most part. They had some difficulty finding a chair for her to sit in - she kept sliding out of most of them - and the desks were way too high for her age group, so they had to make some adjustments. But I'm proud of her for handling her first day back to school after summer break as good as she did. Besides having unfamiliar teachers and students and classrooms, it was pretty chaotic in the morning. Buses were late, kids and parents were flying around all over the place, and parking was a nightmare. None of that seemed to phase her.

Her class is kindergarten through 4th grade, with 11 students total, one teacher, two aides. Everyone seems very nice. The only difficulty at this point is that I have to walk her to class and pick her up. The bus stop is very far away - on the opposite end of campus - and with her low muscle tone, I think she'd be completely worn out by the time she got to class to start her school day. We'll just have to see how this goes. She walks to recess just fine, and the school has tons of stairs and inclines so hopefully these walks will help strengthen her legs. But I don't mind going to her class. It's nice to be able to peek in the window and see what she's doing when I pick her up as well as answer questions the teachers and aides have about her.

She had an even better day today. Had occupational therapy in the morning, and when I picked her up, she was having fun playing blocks with a classmate at the table. That was really nice to see.

The only problem I'm having right now is getting her meds squared away at the nurses office. She is required to have Benadryl there in case she has an allergic reaction. Her pediatrician specifically wrote "Benadryl" on the medication sheet and didn't mention the actual drug name itself, so the generic brand I brought isn't good enough. The problem: Benadryl is no longer being sold because it was pulled from the manufacturer to be repackaged due to an error in the dose chart. I've driven to pharmacies all over the place with no luck, so now I have to go back to the pediatrician and have her sign a new form stating that a generic brand is okay. It's always something. Hopefully I can get this this resolved tomorrow and be done with it.

Glad my little angel is getting back into her school routine. Will be even happier when Gabby starts to get back into hers next week. It's been a long summer!! :)

Summer's Over?

2011-08-16T12:04:00.000-07:00

I don't know about you, but this seemed like one of the fastest summers ever. The break has been very nice, but I'm kind of looking forward to getting the girls back in the school routine.

Besides having a follow-up appointment with the neurologist in July, summer has been pretty uneventful. No trips to Children's Hospital, no serious allergic reactions, nothing too stressful. I wish I could say she's been seizure free, but that's not the case. I do, however, pretty much contribute them to her meds being a little off. Sometimes she'll spit some out and it's hard to tell if a full dose was digested. Other times, Mike will forget to give her the morning dose - he's not the best one to be in charge of this - and then her levels obviously drop. I've gone back to keeping a journal and documenting when I give it, how much, and what her behaviors are. It just helps with determining patterns. And it's nice to reference it when I need to speak with the doctors.

Being overly tired and stressed are still seizure triggers for her as well. If she goes a couple days without napping, I try to get her to bed earlier to compensate for it. Stress is the real tough one because I don't always know what situations are stressful to her. For instance, a couple weeks ago we were at the pharmacy picking up her meds and I put a vibrating back massager on her. It startled her so bad that she had a full blown seizure - one of the worst ones ever. This time it was the pharmacist telling me to calm down. Yes, I still freak out, but I'm getting better. Seizures are just frightening to watch. Gabby remains the pro at them, keeping her cool and using her head. I think that's why Raquel responds so well to her voice.

We pretty much stayed close to home for summer. Mike was diagnosed with Lyme's Disease a few months ago and continues to have some health issues. His joints get very sore so it's hard for him to walk and he fatigues very easily, so walking around amusement parks wasn't in the picture for us. We did lounge around a hotel for a week ...

... but spent the majority of our time at the beach. And how can you complain about that?

You can't - not when you live in Southern California!

Here's Raquel in her new wagon - one of the best investments we've made. It has an umbrella, the sides come down so it's a bench that you can sit on, and it holds up to 250 pounds. We pull that thing all over the beach sand no problem! And Gabby can ride in it, too.

Me and my baby - who isn't such a baby anymore! :(

Running through the waves with Dad.

She absolutely loves the water.

I think the smile says it all.

Last week we were blessed to meet Raquel's former teacher, Mrs. Sara and her aide, Mrs. Heather, in Carlsbad. I guess I can probably call them Sara and Heather now. :) We've stayed in touch since the last day of school, but this was the first time we've seen them since her preschool graduation. I was so happy and encouraged to hear their comments about Raquel. They noticed how much calmer she was, much more focused, not as shaky, and Heather said that she finally looked like she wasn't in any pain. At this point, I think we are in a good place medication wise and am so thankful Dr. Mower didn't make any changes at her follow-up.

Me, Heather & Sara. Thanks you two! Your encouragement, support and advice means the world to me, and I will continue to be Raqi's biggest advocate.

Tomorrow I pick up Gabby's books and then finalize paperwork and meet the nurse at Raquel's school across the street. Raquel is officially in kindergarten this Monday. Wish us luck. And, of course, I'll take pictures...

Good-Bye Preschool!

2011-06-13T15:57:00.000-07:00

I knew the day was fast approaching, but it really seemed to get here amazingly quick. My girl graduated from preschool today. She is officially in kindergarten!

Again, I cannot say enough about these amazing women who have taken Raquel under their wings and allowed her to grow. At one point over the last couple weeks, I asked them if she really was ready to move on - because I was perfectly fine with her staying behind a year since we finally found an awesome class. I was told that it wouldn't be fair to her to keep her, that they've been working on transition skills, and that she's ready and will do fine. I guess I'm the one that isn't ready. Shocking, I know...

Here she is with her teacher, Ms. Sara at the Beach Party last week.

Getting hugs from Ms. Heather, who Raquel grew very fond of. We even had to prepare Raquel for days when Ms. Heather wouldn't be there so she would continue to be, umm, "cooperative" with the others.

Today they had a graduation party that was a lot of fun. Ms. Sara played a slideshow of pictures from the year, which was very touching. Of course I cried. Again, shocking. They also made memory books for us to take home. That is something I will treasure always and it provides a glimpse of how she spent her days while at school - from being taught in a classroom, playing on the playground with "friends", to wearing a chocolate covered face during cooking.

After giving the graduates their diplomas and flowered leis, we had some snacks before going outside to play with the parachute one last time.

It was during this time that I was able to talk to some parents who also have kids transitioning to kindergarten at the same school Raquel is going to be attending. We exchanged phone numbers/email addresses and plan on getting our kids together over summer break so they will stay familiar to each other.

Great job, Raquel! I'm so proud of my little Rock Star! :)

One side note: Raquel has been off of the Prednisolone (as her neurologist instructed), and has remained seizure free since the day she went into the hospital on May 16th. She is happy, playful, and very engaged in activities. Such a nice way to start the summer months!!

An Unexpected Hospital Visit

2011-05-26T15:32:00.000-07:00

Remember how I said that Lamictal can cause a pretty severe allergic reaction in an extremely small percentage of those taking the medication? Well, guess what happened? Those little patches on her hand and chest turned into a full body rash over the weekend of May 14th. That was her last day of this new medication, and Sunday the rash was even worse and she was showing signs of a lot of distress. On Monday morning, I called the neurologist as well as her pediatrician to get her checked out.

Ironically, Dr. Mower called right before I left to take her to the appointment, and was pretty concerned about what I was describing to him. He said to keep giving her the Benadryl, and if the pediatrician detected hives inside Raquel's eyes or the inside of her mouth, we needed to get her to the hospital ASAP.

Of course she had blisters inside her mouth - which explained why she wasn't eating and drinking as usual. Her pediatrician called Dr. Mower a couple of times throughout her examination of Raquel, and Dr. Mower decided to admit her at Children's Hospital that afternoon. I seriously thought I'd get an antibiotic and some ointment and be on my way, so I was pretty shocked - and scared - when the admission department called my cell phone when I was leaving the pediatrician to give me her room number. But I knew that if anything was to happen, we really needed to be at the hospital instead of home.

I assumed they'd just monitor her for the night and we'd be leaving in the morning. Nurses were coming in and taking vitals every 3 hours, and the on-call doctors would come in here and there to check on her, and then Dr. Mower would come himself. Our overnight stay turned out to be 4 days and 3 nights, and I cannot tell you how happy I was when we were finally discharged.

It turned out that Raquel developed the worst kind of allergic reaction Lamictal offers, a condition called Stephen Johnson's Syndrome, which can be fatal. She was given an IV of a heavy dose of Prednisolone - which she was just previously weaned off of - because in order to get rid of the rash, steroids were needed. Ointments weren't an option - it had to be treated from the inside out. She was on Tylenol every 6 hours, Benadryl every 4, plus needed her usual dose of Keppra 3 times a day. I was actually happy after the first day when they decided to put an IV in for the steriod. I was having to give that to her twice and between that and all the other stuff I was giving her, she was becoming very aggitated and I'd have to call a nurse in to help me force it in her some of the time. Fortunately, the Benadryl made her very tired, and she mostly slept the first couple days. Giving her the oral Prednisolone wasn't clearing up the rash fast enough, which is why the IV was needed.

Of course I took pictures - they just aren't the most fun to look at. Here she is all checked in with IV in place, holding the stuffed animal Gabby brought for her to sleep with. They put this velcro cast thing over it and would just hook her up to the machine when they needed to give her the steroid. That was nice because she was able to walk around the room if she felt like it. We'd also do laps around our floor to pass the time.

Here she is kicking back with Dad.

Sleeping soundly during the day. If you look close, you can see the rash on the back of her arm. This was the worst area - and is still the last part remaining. Although faint now, it's still pretty noticable. They say that it will continue to fade over time and that there shouldn't be any scarring.

Resting comfortably at night. We were directly above the Emergency Department, but she slept right through the ambulances/sirens. And our floor was anything but quiet - doors constantly slamming, equipment & beds being moved around. I didn't sleep much, so I took pictures and played games on my cell phone.

On the positive side, Raquel has been seizure free since the day she was admitted to the hospital on the 16th. She is eating and drinking well, sleeping like usual, and doing great at school. The only change we've made is adding the Prednisolone back in her system. She's supposed to be weaned off of it again, but I've been enjoying no seizures and have kept her on a very small dose. Today I spoke with Dr. Mower about that, and he, again, stressed the importance of her being off of steroids - even at a lower doseage. He said besides the organ damage, it can also stunt her growth and cause osteoporosis, and asked me to stop giving it to her today. If seizures resume, we'll go from there.

Here's a picture Gabby took of them in the car on the way home from school. See the chubby steroid face she's sporting? Her stomach looks like that, too.

But besides the chub, she's a happy little thing. I love her so much!

Again, I find myself reflecting on why I'm in this position, why my daughter (and family) have to suffer through this, and what the life lesson is. Maybe I'm educating people through her blog. Maybe I'm finding inner strength I never knew existed. I don't know. But what I do know is that it could be a lot worse. I've thought about the families we've shared our room with throughout our stay and find it very humbling. From the tricycles on the patio with IV equipment hooked up for chemo, seeing the little bald kids in the playroom, the husband and wife learning how to sponge bathe their cerebal palsy child that just had to have a feeding tube surgically implanted, to the new mom of 5-day old twins who had one of them stop breathing. How can I possibly complain? I can't, because I'm blessed.

More Seizures, More Medication Changes

2011-05-09T13:06:00.000-07:00

Raquel did really well adjusting to splitting up the Keppra dose once we started doing that. She seemed to be getting back into a regular routine and was still doing great in school - and not napping in class as much.

Then the Monday after Easter - when she was on Spring Break from school - the seizure activity resumed. She had 7-10 clusters of seizures that day in probably a 20-minute period. These were brief, but just kept coming one right after the other. I gave her the dose of valium as instructed, hoping this would calm her down so she could get some much needed rest. The valium stopped the seizures from happening, but besides walking a little clumbsy, did not make her tired at all. She didn't nap all day, and I couldn't get her to sleep that night until close to midnight. Good times.

She had a seizure the next morning when she woke up, but besides that, was happy and playful - until Thursday night. She went to sleep at her usual time but woke up at 10pm and wouldn't go back to sleep. A little after midnight, she had another seizure and then finally went back to sleep, although she was very restless. She had two more seizures the next day, so I put a call in to her neurologist.

Dr. Mower obviously didn't like hearing all of this and said that because she is at her maximum doseage of Keppra, it was time to start weaning her off of that and on to Lamictal. This is the medication I was hesitant to start previously because of the side effects of skin rashes (one can be very serious).

We are in week one of the weaning process, which will take a total of 6 weeks. The good thing about the Lamactil is that it is a tiny, chewable pill, so it's super easy to give to her. I can even put it in food if needed. I'm so tired of having to force the liquid meds in her. The bad news is that after taking the Lamictil for only 2 days - with a very low dose - she has developed a rash on one of her hands as well as a small area on her chest. Nothing is ever simple, is it? So, again, I call her neurologist.

Dr. Mower says that typically with a Lamactil rash, it doesn't get better over the course of a couple days - it gets worse. And today, it looks much better than it did over the weekend. What he would like me to do at this point is not increase the dose just yet, to monitor the situation over the next week and go from there. He said that if the rash gets worse, give her Benadryl and see if that clears it up. If it doesn't, then I'll need to bring her in so he can take a look at it. If it turns out that she is having a reaction to it, then we'll have to try another medication. It's pretty much trial and error at this point.

As far as school goes, she's been doing great! Last week they had a "teddy bear picnic", which was adorable. It was Raquel's first boy/girl party. :-)

Here are some pictures:

Raquel sitting contently for circle time before we went outside to play. I need to get one of these chairs - they are very sturdy and don't tip backwards like most do.

Sitting with Dad, having some juice & cookies, while listening to Miss Sara read their teddy bear story book. She like the parachute so much...

... she needed to lay on top of it!

And here are a couple Mike and Gabby took on Saturday that I felt deserve posting:

Posing with Dad in her new wagon. And, of course, big sister Gabby was there to enjoy the fun!

Modeling Dad's hat in the tennis courts.

How 'bout that hair? It's absolutely gorgeous!

My happy girl...

Her smile just melts my heart.

Taking things day-by-day, often minute-by-minute, but I'm not complaining. I was reminded by a dear friend on Mother's Day that since I was on this Earth first, my kids chose me to be their Mom because they knew I would give them what they need to learn and accomplish things in life, and to just keep doing my best and let God do the rest. She said I should feel especially honored by that. Thank you, Jodi. xoxo

Some Slight Medication Changes

2011-04-12T16:37:00.001-07:00

Raquel had a great week at school last week. She's been seizure free at home since those first couple occurred the days following her hospital release. She's been happy and content, and seemed to be adjusting well to her increase in Keppra.

Then last Thursday and Friday, she had a seizure at school, coincidentally at the same time - between 1:30 & 2:00pm. Thursday's was very slight - one aide didn't say she'd particularly call it a "seizure" because she was responsive. But on Friday, it was much longer and she apparently seemed disoriented for a few minutes. And on both of these days she was so tired when I picked her up, she fell asleep in the car and I carried her into the house that way. So I called Dr. Mower - AGAIN - and explained what was happening. Have I mentioned how much we love Dr. Mower? Just checking. :)

What he recommended I do was split up the doses a bit. Instead of giving her 6ml in the morning and 6ml at night, he wanted me to try 4ml when she wakes, then 4ml right before being dropped off at school, then keep her regular dose at night. She's pretty much maxed out with this amount of Keppra now, so if this doesn't work, it's time to wean her off of this an on to Lamactil, which is what he preferred her going on before Keppra. But I'm stubborn and do what I feel is best for her because of side effects, and she has really responded well to the Keppra.

I started this new dosing on Saturday, and I have to say that she seems to be adjusting very well to it. She's happier and more playful than I've ever seen her. And she seemed a lot more vocal. No seizures at all over the weekend and I was concerned as to how she'd do at school. Being overly tired for her seems to trigger some of the seizure activity.

Yesterday was a great day at school and they commented on how she was being a lot more verbal and were happy to hear that. She took a brief nap after being in the motor lab (not uncommon for her), but overall had a great day. Today when I picked her up, her class was outside on the playground. I love watching her play with the other kids and parked a little bit away so I could spy on her. But I couldn't see her. Gabby ran over and asked Miss Heather where she was and we went to the classroom and found this:

Apparently this is what she likes to do when the speech therapist walks in. Doesn't she look comfortable...

... on the giant bear?

So I had to wake her up and carry her half way to the car before she fully woke up. When I got her home, she easily went down for a nap and slept for over an hour. But she came out of her room all smiles when she woke up and was ready to play. Because they know that being overly tired can cause her seizures, they are letting her rest when needed. And today she had occupational therapy and then speech along with all the other daily activities. I'm glad they let her sleep instead of insisting she go on the playground. That could've been a bit much for her today.

I'm hoping that this new medication schedule will help. So far, so good.

Getting Settled Again

2011-04-04T13:31:00.000-07:00

I kept Raquel out of school the remainder of last week due to all the medication changes plus the seizure activity going on. I wanted to keep a close eye on her. If she has two or more seizures in one day, I have to give her a heavy valium dose for two days after, so it's important to make sure all is well. This dose is so strong that I had to provide a hard copy of the prescription (they are typically just faxed/emailed in these days), and the pharmacist had to speak with the neurologist to confirm the order. Dr. Mower prepared me for all of that though, and assured me it is okay. And he's not saying to give it to her on a regular basis - just if that happens and then to call him.

Since we've been home, she has had two seizures. One on Thursday morning and then one on Friday morning. Both were very brief - nothing like when we were in the hospital - and probably only lasted maybe 10 seconds. I definitely think the increase in Keppra is helping. In the hospital, she was very stressed by it all and Dr. Mower thinks that because she was so stressed and sleep deprived, that was triggering them. Whatever the cause, I'm just glad it happened there and am glad to have her home. She was a bit out of sorts on Thursday and Friday and had difficulty sleeping. She kept waking up and looking all around as if she was checking to see where she was. That got better over the weekend and she's pretty much back to her normal self today. I'm doing my best to keep everything calm around here. That is definitely an environment that suits her best. Me, too.

She had a great day at school today. She didn't have any trouble getting back into the swing of things, even though she was out most of last week. Her teacher and aides were so happy to see her and kept telling her how much they missed her. Miss Sara even called this morning to make sure she was okay and would be back today. I'm so blessed to have finally found an awesome class for Raquel, and am so saddened that she's only going to be in it for a few more months. :-(

So my last post was done with very minimal sleep and with a spinning head, so I've been asked some clarifying questions. I'll do my best to fill in the blanks...

First off, I was not implying in any way that it was a good thing she is having seizures. What I am happy about is that they were happening while she was hooked up to the EEG machine. This is the third time she's had the EEG done - one at home, two hospital stays - and all of those just showed abnormal brain discharges, particularly during sleep. Because she had multiple seizures during this last test, Dr. Mower was finally able to see what part of her brain was doing what, and has given her a primary diagnosis of Epilepsy, which he can now treat her for. That is a good thing. Knowing what to treat is half the battle. I think back to all the tests she's gone through, all she's endured, and can finally say that I feel a bit of relief. I know it's still an uphill road we're facing, but at least now there is a sense of direction.

So what is the treatment? Basically finding the right medication to prevent the seizures from happening. The Prednisolone she's been on did help decrease some of the abnormal discharges, but not enough to continue on it because of the severity of side effects. This weaning process is going to take 4 more weeks. If the Keppra starts to lose its effect, we will most likely move on to Lamactil. She has also started taking B6 supplements and there is a Ketogenic Diet that is supposed to be amazing - although extremely structured. I just joined a Ketogenic support group of parents using this diet. I'd like to research it a lot more before committing to doing it, but from what I've read, this diet dramatically decreases seizure activity.

And the research begins...

More Tests - New Diagnosis

2011-03-31T13:36:00.000-07:00

Raquel continues be the sweetest thing ever. She's still going to preschool and loving it, and the teacher loves having her in class. If Raquel is sick and misses a class, Miss Sara will call at night to make sure she's okay. It's very sweet - and very apparent that they are all there to help her and want to see her continue to improve. It will be hard transitioning her to kindergarten in a few months.

The only problem we've been having with the back to school thing is that her medication makes her very tired and she will often fall asleep during class - or typically - during speech therapy. On one occassion, the speech therapist actually carried her asleep out of class and over to my car! And trust me, carrying her heavy self that far was not an easy task. My back hurts just thinking about it. Here is a picture I took a few weeks ago. I was pulling up to drop her off at school and said, all excited, "Are you ready to go to school, Raquel?!!" and then saw this in my rear view mirror...

I took that as a no.

Even though she's been attending class on a regular basis, a couple concerning things have happened that I probably should have posted about earlier but haven't. I would say this started shortly into the second week of March. I was waiting in the parking lot to pick her up when I got a call from her speech therapist about 15 minutes before class was to end. She said to get to the classroom right away, that they think Raquel had a seizure. I obviously ran to the room and found Raquel slowly walking around, and a little out of sorts. She smiled when she saw me, but I could tell she wasn't her normal self. Apparently she was doing an activity with Miss Sara and all of a sudden, started staring, her lips began to turn blue, and the shaking began. I was told this lasted about 40 seconds. A few nights prior to this, the same thing happened at home. She fell to the ground and her lips started to turn blue and she got really stiff. I did not see any visible shaking, and when I called her name a few times, she came out of it.

I spoke with her neurologist about this and the overall concensus was that since she has gained so much weight being on the Prednisolone, the Keppra doseage is now too low. When we first started her on Keppra, she weighed 36 pounds. She is now 44. So, he had me increase her dose from 2ml twice a day to 3ml twice a day, and that seemed to work - for about a week. Then last Wednesday, Miss Sara called me right after I dropped her off at school to tell me she had another seizure in class. This time, it lasted a lot longer and the shaking was more visible. Dr. Mower increased her medication again - this time to 4ml - and Thursday, Friday and this past Monday were Raquel's best days in class ever. She wasn't sleepy, Miss Sara said she was more engaged and interactive, and everything seemed to be going well. We were all pleased and feeling very optimistic.

This past Tuesday, we checked into Rady Children's Hospital for her follow-up video EEG test. This was a scheduled test to compare to the one she had last August and see if adding the Prednisolone has decreased the abnormal brain discharges. I wasn't looking forward to this test by any means, but wasn't dreading it either since I've done it before and it really wasn't that bad - just more of an inconvenience of being there so long and confining Raquel to a bed for 24 hours.

This is the only picture I took - her in the hospital gown getting ready for the technicians to hook up the electrodes you can see layed out above her head.

Last time, she was a good little patient and although she wasn't happy about the procedure and was obviously annoyed, she didn't put up much of a fuss. This time was a different story: she was MAD. Another technician had to be called in because me and the other nurse couldn't hold her enough, and she pretty much ended up screaming and crying during the entire hook up. Not at all how I wanted to start this test out. Once everything was hooked up, vitals were taken, and all the admission paperwork was signed, everyone left so I could hopefully get her down for a much needed nap and attitude adjustment. About an hour later, she was resting comfortably. I was relieved, ordered her dinner, and started to get us settled in.

Then the nurse came to take her blood pressure. I asked her not to, that she was finally sleeping, but was told that the head nurse needed it for her chart. So, she quietly slipped the cuff on Raquel's arm and started the machine. Once the cuff began to tighten, Raquel was startled awake and became very aggitated by it all. To make matters worse, the nurse was struggling with the machine and kept getting inaccurate readings even after attempting the test 4 times. When she was leaving to find another machine, Raquel's face turned red, her eyes rolled back, her body got stiff, and she started to shake for what seemed like forever. I pushed the call button and screamed for help and and when the nurses showed up and tended to Raquel, I went to the back of the room and just cried. I can honestly say that I was absolutely terrified. The nurses documented the seizure lasted approximately 4 minutes from start to finish. I should've been the one documenting the time, but - was more comfortable in the corner. The head nurse also talked into the sound microphone giving discriptions of what was happening so Dr. Mower could listen to that while he watched the seizure taking place. All sounds and images are recorded during this 24-hour hospital stay.

After the seizure, Raquel was very tired, and slept and slept and slept. This happened at 4:45pm, and at 8pm, I had to put the light on to wake her up so she could have dinner and give her the nightly meds. She fell asleep at 9pm and slept until 7am. And she slept pretty soundly. I'd know because I didn't sleep at all. I sat there and held the "help" button. Really.

When she started to wake up, I sat down with her and was giving her some cereal snacks. After a few minutes, her face again became a bit flushed and she starting staring and not looking right, and then mild tremors on primarily one arm started. Again, I hit the help button and the nurse came in and before she got to the room, it had already subsided. A few minutes later, another one happened. Again - me and the help button called for the nurse. This time she stayed with me after the second seizure stopped. While I was answering the nurses questions, another one started. She apparently was having what is called a "cluster" of small seizures. The nurse asked if this always happens in the morning when she wakes up and I really have no idea. I would like to hope it doesn't, but I'm not in her room when she wakes up like I was yesterday and typically don't wake up my sleeping children unless it's absolutely necessary.

When Mike & Gabby showed up to take us home at 1:30pm yesterday, I was really concerned that Dr. Mower would want to observe her for another night because of all the stuff going but he didn't. He came in and went over all the test results, and was very sweet when he took me aside and told me that I need to calm down when the seizures happen. Again, he had not only video but audio and could feel my panic. He said that he knew I was scared that when this happens she is going to die and that I need to realize what she has is not life threatening and that I need to calmly be there for her and help her through it. Hearing that did help. And when she started having yet another seizure - in front of Dr. Mower - I was much calmer and he was able to explain to Mike what he was seeing on the EEG screen. He then ordered up an IV for a big dose of Keppra to get her meds at a regular level then switched a few things. The EEG showed that Raquel is definitely having true epileptic seizures at times now, which is common for her LKS, and she is going to be weaned off the Pred over the course of 5 weeks. He has also increased the Keppra dose for now and we'll just go from there.

I can't tell you how happy I am to be home. And I can tell my little Rock Star is, too. So - we are all glad to be home and she has had a great day. And no seizures at all.

Off To A Great Start

2011-02-04T14:58:00.001-08:00

I am very happy to report that Raquel did amazing at school this week! No issues/concerns from the teacher at all. What a relief! Raquel is happy to go, greets "Miss Sara" with a big smile, and gladly walks with them to class. And I'm also relieved that effective therapy has finally resumed. This week she had physical therapy (APE - Applied Physical Education) on Monday & Wednesday, and then speech on Tuesday and Thursday. Next week occupational is thrown in there somewhere.

I absolutely love Miss Sara. They were not exaggerating in the IEP about how wonderful she is just to get me to go along with the class. She IS wonderful. She seems so compassionate and sincere, and you can really tell how much she loves the kids when you watch her interact with them.

One of the things that she does is send home a little "report card" each day in their backpacks. It tells how they greeted their friends (by saying their name, making eye contact, waving, etc.), what they ate for lunch, what they did in both their large & small group activities, as well as what they made in art. That's very cool and just knowing these little things really make it easier to leave her each day.

Raquel comes home from school very tired and immediately naps for a couple hours, and then wakes up bright eyed and raring to go. I think being back in school is a really great thing. The behavior problems she was having before are pretty non-existent, so now she is able to be attentive and learn new things.

I am so proud of her! Tomorrow we are celebrating by going to the Wild Animal Park. I'll bring my camera so I can post new pictures.

Have a great weekend!

Can Things Really Be Falling Into Place?

2011-01-28T13:24:00.000-08:00

I like to think that I'm a "cup's half full" kind of girl. I typically always look for the bright side in bad situations just because that's how I am. And that annoys a lot of people. Trust me, I know who you are!

These past couple years of dealing with Raquel's disorder have been beyond challenging. There have been countless tears and an equal number of sleepless nights. When I look back sometimes, I often wonder how I managed to deal with it while keeping a little bit of my sanity. And to this day, when things are tough, I still reflect on why I've been put into this situation in the first place and try to figure out what I'm supposed to be getting out of it - besides a healthy daughter, of course.

These past few weeks have illustrated how much we have accomplished during this time. First, Raquel had a great school district assessment before Christmas. That led to really great IEP meeting in January - the first one ever. When I typically hear the word "IEP," it felt like a kick in the stomach because I knew the process. Fortunately, I now have a different reaction. It may have taken me two years, but I really feel the district is getting the fact that I know my child best, and for that I am truly grateful.

A week after the IEP, we had our annual IPP with the Regional Center. That's the meeting where I meet with our case worker, review Raquel's previous goals and establish new ones. It was at this meeting that I realized how far we have come. So many of the behavioral goals we had in place were no longer even necessary. And it was a wonderful feeling watching Heather scratch things off her list, obviously very pleased with Raquel's progress.

Yesterday, we had Raquel's neurological follow-up. We haven't seen Dr. Mower since her 24-hour inpatient video EEG monitoring last August. Again, more good news. Dr. Mower was SO excited about how she's doing! He said that she is a completely different child. She is so calm now, so focused, so attentive. He was comparing notes from the last visit to yesterday and was literally in awe. Raquel now consistently - and appropriately - says, "What you doing?", "Me do it!", "Put it away!" Another favorite word is "Mine!" Not one of my favorites, but I love to hear her say it. And she is just babbling away. Dr. Mower put in an order for another 24-hour VEM thing (sigh) for March, and then, depending on test results, plans to start weaning her off the Prednisone. YAY!!! She has gained 5 pounds since being on the steroid, but he said that was completely normal and that she is still well with in her weight percentile for her age. He also ordered more blood work (sigh - again), so I have to get that done within the next couple weeks. And I know I'll wait until the very last day because I hate taking her to the lab. :-(

And today, we met Miss Sara - Raquel's new preschool teacher. Raquel will be starting school on Monday, and I wanted to bring her by today to meet everyone. I think this will be a really great fit. Miss Sara seems very sincere, great at multi-tasking everyone, and the kids in her class appear really sweet. Raquel will have physical therapy on Monday & Wednesday and speech on Tuesday and Thursday. OT overlaps one of those days, and then Friday is the free day where Miss Sara fills therapy time in with cooking. I'd like to be a fly on the wall for that one!

Here is a picture of Raquel checking out her new classroom. I really think she's going to like being back in school.

As far as Gabby goes, she is finally feeling better after suffering from chronic sinusitus, bronchitis, and ear infections! She's been out of school since Christmas break, but will start again the first of February when the new packet begins. She's been spending a lot of time with her cousin and "BFF", Taliah, and loves having her for sleepovers.

And we had fun making gingerbread cookies the other night - except doing it at 8pm was probably not the best idea on my part...

And today they are celebrating Tali's 5-year birthday by going to Disneyland!!! They were just a little excited to go. Gabby was up at 5:30am packing her bag. Thanks Aaron & Jessica for taking them. I love you!

Tea cup ride, anyone?

I'm so happy to end the week on such a high note. I can honestly say that I have a sense of relief right now and am feeling very, very blessed.

Have a great weekend!

Annual IEP Complete

2011-01-06T14:51:00.000-08:00

First - Happy New Year, and I apologize for the lack of posts. I've promised to keep up with Raqi's blog much better this year. I don't want everyone thinking things are the same, because they aren't and she continues to adjust to her meds better and better and make progress.

A few weeks ago - before the Christmas holiday break - I met with the school district and therapists so they could do their yearly assessment of Raquel. This enables them to put new goals for her in place as well to modify the old ones as they see fit. I didn't really know what to make of the assessments because they are typically handled very poorly (for Raquel), and I struggle watching them judge, make opinions, and talk among themselves about what they feel she can and can't do. Plus, she's been out of school for quite awhile and I didn't know how she'd handle being in a classroom setting - especially with me having to interrupt her nap in order to get her there.

This year, my respite worker Christy came with me. I'm inundated with questions from a room full of people, and I really needed someone to help with Raquel so I could effectively answer all these questions. Gabby also came with us. She's come to know the school therapists pretty well, and now that she's a big-time 3rd grader, doesn't hold back on her comments. So this time, whenever a therapist would say this or that, Gabby would interject with her two cents. And they actually listened to her! At one point when the Applied P. E. teacher was trying to get Raquel to do something, then commented to the district psychologist that it was a skill that she couldn't accomplish yet, Gabby said, "No - you need to do this!" and low and behold, she did it.

Overall, the assessment went really well. Raquel was confined to doing table time and sat between two therapists going back and forth with tasks for about 20 minutes. At that point, she slipped in her chair and bumped her chin and started crying from that, and they let her out. She then roamed the room and her teacher commented on how she was remembering everything. Raquel even went to the exact spot where her name tag use to hang. She clearly remembered the classroom and everyone in the room commented on what a different kid she was since the last time they've seen her.

The day after the school assessment, the district psychologists came to the house to do their in-home evaluation. Again, Raquel was very calm and cooperative. They were very happy to see such a change in her temperament. I'm glad they noticed.

Today we had her annual IEP where all of us get together - outside of Raquel's presence - and discuss progress, goals, transitioning her to kindergarten (YES, KINDERGARTEN), etc. It's typically a tough meeting for me and Mike was working so I had to do this one on my own. I have to say that, again, it went really well. I think I've come to know these people better, and now that Raquel has a diagnosis of Landau-Kleffner Syndrome, they've acknowledged that and are much kinder with words.

Raquel will most likely be starting back to school next week, once I get all the paperwork in order and am given the green light. She won't be in the morning class any longer and instead going to the 11:30 - 2:30 time slot. I think this will work out much better since I have to give her meds in the morning, and if she was in the morning class, they would be responsible for doing that. I think that would aggitate her, and we all agreed that school needs to be about academics and not them getting her upset trying to get accurate doses into her. This will also work out much better for me with getting Gabby to school and stuff. I will no longer be rushing around to get one here and another there in a short amount of time. I have a sense of relief in that regard already.

I also think it will help keeping Raquel's morning routine as consistent as possible. The medication makes her tired and she typically doesn't wake up until 7:30am. If she is in the morning class, I would without a doubt have to wake her up each and every morning, and I don't think that would be a good thing. She needs time to wake up on her own and start her day when she's ready.

All in all, feeling pretty good about this right now. We have her neurological follow-up in a couple weeks, and will go from there.

I'll post again soon. And, yes - with pictures. :)

Steroids = Huge Appetite

2010-11-19T14:49:00.000-08:00

This is Raquel's 3rd week of being on Prednisone, and I've got to say that the side effects I was the most concerned about (restlessness, irritability, sleep issues, etc.) have not happened as of today. In fact, I was so paranoid about starting the new medication, that I couldn't even do it. After walking into an argument Mike & I were having about me not giving her the meds, my wonderful respite worker asked if she could do it. I said yes and left the house in tears. It is really hard giving medicine to a child that can't tell you what they experience from it. And Christy is awesome and basically a nurse and knows how to deal with side effects when and if they occur.

The main side effect I am experiencing with the Prednisone is her appetite. I cannot get enough food in her. She's grown a pot belly and her face is getting round. Fortunately, I have a healthy food/fridge policy in our house so she's not eating a bunch of junk. Just yesterday she enjoyed a plate of raw cauliflower! But she seems to always want some kind of snack or she gets pretty aggitated. And I mean aggitated.

I've been so fortunate to have found this LKS support group and have learned so much from all of their experience, support, and advice. Many talk about the steroids and how it briefly stunts growth in height. Some kids have gained weight, but their shoe size and height did not increase again until after the steriod is eliminated, and then it readjusts. All of this is very strange and frightening to hear, especially considering Raquel has been getting taller and taller on a regular basis. And now I wonder if this will be ending for her steriod duration. But I'm so happy to have found some people going through the same process that we're going through and appreciate their calls and emails. Just knowing they check in to see how I'm doing is a big relief and keeps me going, and I don't feel so alone.

I have noticed some positives from the Prednisone. She definitely seems to be trying to initiate conversation and is way more vocal, even if I don't understand exactly what she is saying. She still clearly understands words and follows simple instructions. She is very happy and calm, and her walking is more stable. She will often use 3-4 word sentences when answering my questions, and again, is the absolute cutest thing on this planet. I'll post pictures soon. Sorry Grandma H - I know you wanted them before now. :-)

Have a great weekend everyone and I'll start posting again soon!

The Cup Is Half Full

2010-10-19T15:32:00.000-07:00

I can honestly say that for the vast majority of the time, I do a really great job at keeping it together. I continue to stay optimistic, be Raquel's biggest advocate, and push, push, push for answers, treatments, etc. But I also have the days when it all sort of gets to me and I start to wonder what her uncertain outcome will be. Those days are tough, so I try to force myself not to have many of them.

But sometimes I can't help it. And that's kind of where I've been this week - a bad case of the blahs. Don't get me wrong, nothing has happened to make me lose faith. I think it's just natural to have these feelings sometimes, as much as I hate it.

On the upside, I've joined a Landau-Kleffner Syndrome support group and am getting a wealth of information about certain medications, treatments, specialty doctors, what has & hasn't worked, - and outcomes. Everyone I've spoken with says the light exists at the end of the tunnel, but as one mother stated in an email: "...the effort extended on our daughter's behalf traveling through the LKS darkness was monumental." I completely get that. It is definitely an uphill battle, but one I will win. I guess this is where my persistent and stubborn traits come in handy. I refuse to give up, and am hoping to find a LKS Neurological Specialist somewhat close to get another opinion as far as treatment goes. Sacramento is as close as I can find right now but I've only just begun the process.

As far as outcomes go, the vast majority say things definitely start to change around puberty. It's basically all about finding the right meds and producing speech before that. One mother has a 21-year old daughter who is a senior in college with a 3.7 GPA. Another has a daughter who is a senior in high school and uses sign language to communicate. But both are extremely functional. And these two particular cases were originally diagnosed so long ago, LKS was unheard of. I'm confident that we've advanced in treatment/therapy since the 1990s and more options will be available to help Raquel. It's just a matter of finding the resources. But the cup remains half full, and I'm determined to do whatever it takes.

Good-bye Depakote!

2010-10-07T14:14:00.000-07:00

I am very happy to report that Raquel is completely off Depakote and on to a much more mild anti-convulsant called Keppra. Things continue to be positive, and she is clearly out of the Depakote fog she's been in. Her checking out "episodes" are very rare, and she continues to make progress.

She is becoming more vocal, more engaged in daily activities - and just more functional, even though the progress is still gradual and day by day. It is very apparent that she clearly understands what we are saying and she is now coming up to us and trying to initiate a conversation. She appears less frustrated and seems much happier overall.

The only negative thing I have to say about Keppra is that it did bring back some of her unruly behaviors. But I am able to deal with them much better now by knowing how to react and how not to, and they are less intense than they previously were. They are also becoming less frequent as she continues to adjust to her medication.

And she truly is the cutest thing ever created. She's got curls galore, and a smile that just melts your heart. And no, I'm not being partial because she's mine! :-)

Next on the agenda is adding a very low dose of Prednisone, a steroid, to the mix. This supposedly helps produce speech in kids with Landau-Kleffner Syndrome. She will only be on it for a short period of time - probably 6 months - and then more tests will be done. I haven't started her on it any sooner because I wanted her to fully adjust to Keppra to make sure I could determine what side effects are caused by each medication. And her neurologist said to take my time and to add it when I felt it was right. It's feeling right about now, so I will start her first dose tomorrow morning so I can see how she reacts to this new med over the weekend and then go from there.

I continue to stay very optimistic. The other day I told her I loved her and she responded: "Love you!" which was the first time she has ever said that to me. And yesterday, Gabby called to her and she responded - kind of annoyed - with a "What??!!" She also has a new favorite song: Three Little Birds by Bob Marley.

Hope everyone has a great weekend, and that my little girl handles the new medication okay. I'll keep you posted.

No Depakote - Day 2

2010-09-03T12:40:00.000-07:00

I am really trying not to get ahead of myself here, but I have to say that Raquel is like a new kid. Today is only the second day of her being completely off the Depakote and I've already noticed some very positive things. It's like she's coming out of a fog.

I cannot remember the last time I have seen her so happy, so playful, so content. No behaviors whatsover - just a bunch of smiles. And today Gabby told me that she thinks she's getting her little sister back. :)

I have noticed a big decrease in Raquel's "episodes." In fact, today is the first day I have actually taken her out of the house during the 10am - 11am time slot in months because this is when they are usually the worst. She got a little bit out of sorts at one point, but that was extremely brief and she came right out of it. Strangers didn't approach us to see if we needed help, and we were able to blend in with everyone else at the grocery store. I'm sure this seems pretty trivial to some of you reading this, but to me, it was a pretty big hurdle to cross. Again, trying not to get too encouraged and to take it day by day. I'm just pleased to see positive changes so soon - and hope and pray they continue and that I'll have another happy blog post over the weekend!

Final Week Of Depakote

2010-08-30T13:58:00.001-07:00

This is Raquel's last week of being on Depakote. Actually, Wednesday night will be her last partial dose so come Thursday, she will be solely on Keppra. I am hoping and praying that she will do much better on this medication.

I've already noticed some changes since the weaning process began. She's definitely not as groggy and is a bit more stable on her feet. She still has these "episodes", but they aren't as dramatic as before, although I am still troubled by her having them at all. She doesn't seem nearly as anxious, but definitely has her moments. Once we began the weaning process, she started waking up at 3am (again) and her sleeping patterns got off a bit. But now we have a soft light in her room at night - she previously liked it very dark - and the light seems to help. Old behavior problems also returned, which the neurologist warned me about. Depakote was supposed to be helping tame the bad behaviors, and once we lessened the dose, the hitting, scratching, biting, head butting returned. Combining that with the sleep issues, the last week or so hasn't been a bed of roses. But now, for the most part, she is back to her regular sleeping routine and her behaviors are managable - unless she's tired, hungry, or just in a bad mood. :-)

I'm also noticing more functional play. And she wants to participate in playing instead of just watching others do so. When our sitter brings her year and a half daughter over to our house, Raquel clearly models what she is doing. You would assume she would try to copy Gabby because of all the time they spend together, but I think it helps to have someone smaller and acting more at her level. Gabby tends to be all over the place doing a million things at once, and I think that often overwhelms Raquel. When Gabby will intentionally sit down and play with her one-on-one, she seems to do much better in that regard and sucks up all the attention Gabby is giving her. You can really see Raquel sparkle when Gabby gives her her undivided attention.

Raquel is also listening more and clearly understands what we tell her. She is jabbering more and trying to initiate conversations. And she's trying to vocalize answers to my questions. It will be interesting to see how this develops.

As far as the Prednisone goes, I'm not starting that immediately after the Depakote is over with. I want to wait a couple weeks to see how she's handling the Keppra so I can determine whether or not she is having adverse side effects from that before adding another medication. Her neurologist is fine with that, and we have our next follow up appointment with him on October 13th.

The journey continues...

Video EEG Complete

2010-08-17T14:34:00.000-07:00

I am very happy to report that Raquel's 24-hour inpatient Video EEG Monitoring test is complete and she is home and resting comfortably. Here are some pictures:

Gabby being a little nervous waiting for the EEG technicians to come in. She stayed right next to Raquel until they asked her to leave.

Here she is in her hospital gown waiting with dad while they got the equipment in order.

Here's what the electrodes look like. They get glued all over her head - and there's a whole lot of them.

It doesn't hurt when they do this. She was mad that she was being confined - and it does take a little while to hook them all up. A nurse wrapped her in a sheet to keep her arms from moving, and I had to restrain her legs. Then they wrap gauze all over her and top it with a gauze cap.

Introducing my very tired Little Smurf.

She eventually did take a nap ...

...but only for 15 minutes. Even though she had all that stuff on, she was a real trooper the entire time. I had to keep her confined to her bed for the full 24-hours. She wasn't able to walk around, not even in the room. Keeping her centered in front of the camera wasn't that easy at first, but I ended up laying down with her and watching television, reading books, etc. and I think she got very used to having some quiet time with Mom. We ordered room service, had people from the playroom constantly checking on us to see if we needed any toys, etc., and a lady from the healing center even came in to play the harp.

This is what the VEM looks like. To the right was a live video shot of Raquel. To the left was the EEG being displayed. This test allowed Dr. Mower to observe Raquel's movements while observing the EEG at the same time to make sure her physical activity is consistent with her brain activity. It was all very fascinating.

Dr. Mower came to check on us yesterday at lunch, as well as this morning to sign off on our discharge papers, discuss the test results and make some medication changes.

Here she is getting the electrodes taken off. I told you there were a lot! And even though they tried to get all the gunk out of her hair and even sort of washed it, boy does she stink! It will probably take a week of shampooing to completely rid the smell.

Besides stinking and having a red mark on her forehead from one of the electrodes, she's back to her normal self and obviously very happy to home, able to walk around, and get back into her normal daily routine.

So, what were the findings? Well, I guess there's good news and bad news. The good news is that she is not having seizures. The bad news is that she is still having abnormal brain discharges at night while she is sleeping. This is pretty consistent with Landau-Kleffner Syndrome (also called epileptic aphasia). These discharges don't appear to be less frequent than they originally were when we did the in-home EEG over a year ago. That basically means that the Depakote she's been on has not helped in this regard, and, since I am having issues with her being on it in the first place, we are weaning her off of it and on to another one and then adding a very low dose of Prednisone, which is typically what is done when treating LKS. Prednisone is often attributed to producing speech. We have a follow-up with Dr. Mower in 8 weeks, then have to do the 24-hour VEM all over again in 3 months so he'll be able to tell if his treatment is working as it should be.

I'm not really happy about having to do it all over again, but it definitely wasn't as bad as I thought it would be. It's just more of an inconvenience. And the overnight stay really put things into perspective because we were in the Hem/Onc department and there were all of these bald little kids walking the halls and being pushed around. Raquel may have looked like a smurf for 24-hours, but I'm fortunate I was able to lay in bed with her and watch tv instead of sitting next to her in the chemo room with an IV. That was brutal to watch. One of the little boys was just a year and a half old, and he came to say good-bye to her when we were leaving.

Again, more answers, not all of them good, but I continue to remain positive and am happy we are making medication changes. The cup is still half full, remember?

VEM This Monday

2010-08-13T15:02:00.001-07:00

It seems like we've been waiting forever to have the 24-hour Video EEG Monitoring test done at Children's Hospital. I'd be lying if I said I was looking forward to Monday. What I'm looking forward to is getting the test over with. I've talked to several people who have either had the test done themselves or who had to take their kid in to have it done. Sounds like it is far from being a picnic but regardless, it is something that needs to be done and we'll deal with it the best we can.

The hospital called earlier today to confirm the appointment and to remind me that they would prefer her to be sleep deprived. Of course THEY would like that. They aren't the ones attempting to keep her up all night then dealing with her crankiness from the lack of sleep. I told the nurse that I would try, however the medication she is on makes her extremely drowsy. They would like Raquel to be asleep for a good portion of the EEG, and I really don't think that will be a problem if she's well rested going in because of her being on the meds. Food is provided (for her), but they recommend that I bring her usual snacks and some of her favorite items to play with so things stay as normal as possible. There will be a television in her room and I can bring some dvds to play in addition to that, but they really want her confined to her bed as much as possible and not wandering around.

A few of the reasons for doing this test are:

to distinguish epileptic seizures from episodes that may mimic epileptic seizures;
to characterize the type or types of seizures that a child is having, and
to localize the part of the brain where the seizures are coming from.

In Raquel's case, her neurologist is not convinced she is having true seizures, but the in-home EEG we did awhile back showed that she was having abnormal brain discharges, particularly at night. These discharges were similar to Landau-Kleffner Syndrome, and the VEM will show whether or not she has this.

We should have some more insight early next week as to what is making Raquel tick. Hopefully it will show that she's not having any seizures at all and can be weaned off the medications completely. If it shows she does need to be on an anti-convulsant, we will pursue other meds that are more suitable for her so she can stop suffering from all the adverse side effects.

Input From The Behavior Therapist

2010-07-14T14:01:00.000-07:00

Last week, our behavior therapist came when our respite worker was here so he could make sure that things are staying consistent and that everyone is on the same page. He put a couple procedures in place, one that I particularly knew Mike would have a hard time with, so today he came to specifically meet with Mike and review everything.

I've touched in the past about how the hubby is extremely emotional when it comes to all three of his girls. He always tries to fix everything, and has a difficult time watching any of us, particularly Raquel, struggle. If he is outside working or in another room and hears her carrying on a bit, he immediately comes to her rescue. That is not in her best interest, and although he's been told this over and over by practically every therapist we've been fortunate enough to work with, I think he really needed to hear it coming from a guy. And Mike, our therapist, did a great job explaining it all to him. And this time, I think Mike, my hubby, really listened.

One of the things Mike worked with me on last week was how to reduce the inappropriate behaviors. By catering to these, we are teaching her that when she acts up, she gets rewarded by getting our undivided attention. I have definitely grown in this area with help of many behavior therapists, and when she throws herself down on the floor and starts kicking, I easily tell her to knock it off and go about what I was doing. But I learned last week that although I don't acknowledge them physically, I am being WAY too vocal with her, and by doing so, I'm still reinforcing the behavior. I may not be sitting on the floor with her, but she still wins by getting my attention with words.

So last week, I started doing things a bit differently. If I was interacting with Raquel and she did something aggressive such as hitting, scratching, etc., I immediately put her down or walked away from her - without saying, "Ouch!" or "No hitting!" or "That's no!", or even making eye contact for that matter. And this was a real tough one because your automatic reaction is to be verbal. But by not reacting vocally, I can honestly say that these aggressive behaviors have decreased over the week.

The other thing Mike implemented last week was Raquel following instructions. This teaches her who is the boss. He demonstrated this activity by doing clean up. He first told her to sit down, which she eventually did after about 30 seconds. Then he asked her to put some toys in their container. We can never verbally give the instruction more than 3 times, but can use non-verbal cues such as tapping the floor for sitting. The goal is to "wait it out" until she does what is instructed. This shows her that even though she is very stubborn, I am more stubborn than she is and will win. When she follows the instruction, she is rewarded by praise, high fives, etc. I can do this activity anytime I give her instructions, and I didn't realize how often I did just that throughout the day with a variety of activities. And if I don't have time to "wait it out", I help her follow through with the instruction then go about our business. Again, great results with this one. After just a couple days of telling her "arms up" to help her undress herself before the bath, she will now walk over to me with her arms already lifted once she sees me start running the water, or immediately do it once instructed.

Mike was very pleased with my feedback and said that if I consistently keep doing both of these activities, I will see amazing results in just a short amount of time. It will not only eliminate the aggressive behaviors, but will also teach her what appropriate behavior is and will help in all areas - including her interactions in school.

I am very thankful to have the guidance of another wonderful therapist. We meet again in two weeks. I'm pretty confident that I'll have more success stories to share with him then.

Blood Work Complete

2010-07-06T12:57:00.000-07:00

I finally got a call back from one of the neurologists and was told I could go to the lab and have the blood work done before her first dose instead of before the second. I went yesterday morning, and was fortunate that the lab was open even though it technically was a holiday. And even more fortunate was that only one other family was there when we arrived, and they were just finishing up. I literally signed in, answered a couple of questions, and was called before I could even take a seat.

I'm a wimp when it comes to having blood drawn from Raquel and struggle with holding her down. I have to be the bad guy enough just giving her the meds 3 times a day! They obviously noticed my hesitation and said I could wait outside, which I gladly did. After a few moments of hearing her cry, out she came with a Care Bear band aid on her arm, and she reached out for me as soon as she saw me. Mission accomplished.

I did forget about Dr. Mower requesting a urine sample as well, and she was not cooperating in that regard due to lack of fluid consumption. Now I have to collect the sample myself and then drive it back to the lab within 2 hours. Once that is done, all tests are complete until the EEG in August.

I did get info regarding the 24-hour inpatient video EEG thing. It really doesn't sound like too much fun. I have to keep her up until midnight the night before, then wake her up at 4am and keep her awake until we check in at 9:15am. And no sleeping in the car on the way down there. Once there, we have to take the shuttle to the EEG building, get the thing strapped to her head (with only 4 hours of sleep in her), and then I guess get placed in a room where she can be monitored for the next 24 hours. Good times. Hopefully I'll get a bed, too.

Implementing Picture Rewards

2010-06-28T12:36:00.000-07:00

Mike, our behavior therapist, came by today to explain how he wants me to begin implementing the picture rewards. The pictures we are starting with are Moose from Nick Jr, our dog Annie, the wading pool, and my car. Mike took all of these pictures and cut them in half. He then gave her 3 items and asked her to put each of them inside a bucket. When she did that, he gave her half of the Moose picture. He waited a few minutes and then had her do it again, praised her and then gave her the second half of the picture. Then we put Moose on tv so she could watch it. I can use these reinforcers however I want - in a therapy type setting like we did today with work, or I can give her the first half as a reward for any type of good behavior. I decide what the reinforcer is based on what I feel like doing, and I also control the time frame between her getting both pieces. It's all about Raquel associating good behaviors with getting preferred items, and me being the one in charge. Consistency is key, so Mike, Gabby & my respite worker will need to be on the same page.

What I can't do with this reward system is take away the first piece once it's been given to her if she starts to act up, and I can't give her a piece as a reward for following my directions if she was attempting a forbidden behavior. For example: her trying to turn on the stove and me telling her not to. I can't give her a piece for not doing it because then she'll know that all she has to do is go to the stove, wait for me to say no, and then not do it and get a piece. And trust me, Raquel is a smart, manipulative little girl. She would have that one down in NO time!!

Next week, we will review todays procedures, make changes if needed, and then he wants to start addressing the behavioral issues. Today, I had to give her the meds right when he got here and she unfortunately started having her reactions to them and got very tired and woozy. She did really seem to enjoy working again and I am so happy about that. I also think that her having a male therapist is going to be a great thing. She's so used to associating the work with the ABA Team of wonderful women we had on a daily basis. By coming weekly, it's like she has a new playmate. And although very familiar with ABA, he's trying to make it a bit different than that even though it will still be very structured. At one point today, we were sitting on the floor and he was explaining the reward procedures to me. Raquel came and sat right with us and watched us talk and had a big smile on her face. Typically during therapy, she would throw a fit when I would engage in a conversation with the therapist since she wasn't the focus of the attention. I was proud of her letting us talk today.

Raquel is still having these episodes. I know that Dr. Mower said I shouldn't freak out, but that's easy for him to say. It continues to be extremely difficult to watch - to the point where Mike told me I shouldn't take her inside stores anymore. And they are concerning. When complete strangers come up to me and ask if I need help, there is a concern. So, I called Rady Children's Hospital this morning and asked for us to be on the cancellation list for the 24-hour inpatient video EEG. The sooner this gets done, the better. I don't want to wait until August unless I absolutely have to. Plus, if Landau-Kleffner Syndrome is ruled out and she's given an Autism diagnosis, she qualifies for more services.

I also left a message for Dr. Mower to call me regarding the blood tests he has written up. He wants these taken before her second dose which is typically around 2pm. If you're familiar with the lab at Children's Hospital, you know that it's not a place that you can ever zip in and out of. Because her medication is an anti-convulsant that needs to be administered at a specific time, I called the lab to see if there was a way to get an appointment. No such luck. Instead, I was told that I needed to check in 2 hours before I would give her the meds - their typical lunch time waiting period - which puts me at the lab at noon!! Not a good thing, especially when you factor in the parking situation as well. I am hoping that I can do this test before her first dose. If so, I can be there when they open at 7:30am. If not, I am going to see if he can transfer the order up here to Palomar Hospital instead.

Last weekend, Mike and I attended a 100-mile car run that was put on by the San Diego Panteras Club. The proceeds this year went towards the Wounded Warriors Foundation. We overheard the main guy telling someone that next year, it looks like it will be about Autism. When we were leaving, we went up to his wife and told her about Raquel. She immediately introduced us to a member of the club that has a 13-year old Autistic son. We exchanged contact information and he said I definitely need to be in contact with his wife, that they've tried everything, almost had to put him in an institution because he was so difficult, but now he's doing much better. It's great when you are able to meet others that have gone through and overcome some of the challenges.

Here's a picture we took the night before the race when Mike took Gabby to Crusin' Grand.

Mike wanted boys at first but has seen first hand that girls enjoy to hike, fish - and love the hot rods, too!

Neuro Follow-Up Complete

2010-06-22T13:36:00.000-07:00

This morning, we had a rather lengthly follow-up appointment with Dr. Mower. His first comment to me after greeting us was, "You've had a pretty difficult spring." Yes we have. But hopefully that just means we'll have a really great summer. The cup is still half full, remember?

There weren't any tests to review this time so we basically just talked after Raquel's initial exam. We stressed our concerns about these "episodes" going on, and then one happened while we were there. He watched intently and then told me not to be scared by them, that they resemble autistic like behaviors and he doesn't feel they are seizures. Even the staring spell that I thought she was having he said wasn't one because she was blinking and would easily redirect her focus. He said he thought she was just aggitated and reacting to that. She has lost weight so her meds may be off and her levels could now be too high, which could be the cause of this so tomorrow I have to take her back to Children's Hospital before I give her the second dose and have blood work done. Then I'll talk to him on Thursday and see if he wants to make any adjustments medication wise.

He was very happy to hear the positives that we are noticing: improved sleep, less frequent headaches, more vocals, better focus, etc. and doesn't want to change medications at this point.

He does want us to do the 24-hour inpatient video EEG monitoring, so that has been confirmed for August 16th at 9:30am at Children's Hospital. Dr. Mower or one of the other neurologists in his group will be administering the test. Once the test is done, he said we'll know if she has Landau-Kleffner Syndrome (LKS)/Epileptic Aphasia. He also requested that they do blood tests for a couple of very rare metabolic diseases. It sounds like if these tests come back negative and the video EEG shows she doesn't have LKS, then she may be given an Autism diagnosis.

Mike did mention that he's concerned about her having a bad reaction to the Depakote, that both his sister and aunt couldn't tolerate it. Dr. Mower said if the video EEG in August shows the abnormal brain discharges she was having are gone, then other anti-convulsant meds would do the same thing. At that point, if we are still having concerns and feel she is acting overly medicated, we can start trying to find a better fit medication wise. Again, the blood work tomorrow will tell if her levels are too high or not. It could be as simple as that.

I feel a bit relieved knowing that the episodes don't need to freak me out. Having Dr. Mower observe it and then look me straight in the eyes and tell me that I don't need to freak out was a very reassuring thing. He reminded me of all the tests that have been done and how so many things have been ruled out. And he stressed therapy, therapy, therapy. And the more the better. In-home behavior therapy will resume next week. Now I just have to work on getting speech and occupational going again.

Neuro Follow-Up Tomorrow

2010-06-21T15:02:00.000-07:00

I normally get a bit nervous before going to see Dr. Mower. I don't exactly know why - he's an awesome doctor and we couldn't be more blessed to have him. I guess it's because he's a neurologist, and I don't like Raquel needing to have one of those. But, such is life.

Today, I'm feeling a bit different. I am looking forward to the appointment and hoping to get some answers. Although I continue to notice improvements in Raquel - she's talking more, sleeping better, is much calmer, and playing more functional - these "episodes" are continuing and still very much freaking me out. Mike actually filmed one occasion and I plan on bringing the camera to play it for Dr. Mower in the morning.

Since Mike is home a bit more these days, he's been observing the episodes and quite honestly, having a very difficult time with it all. He's very emotional when it comes to his girls, especially the one that can't tell him what's wrong so he can try to fix it. Last night, after a long drive home with Raquel from his parent's house, he got upset, stressed, concerned, and then just mad about the situation. He said that we've turned her in to a prescription drug baby, and that was hard to hear - especially considering that I'm the one administering the meds, or giving Gabby the stuff to give to her.

So I'm looking forward to tomorrow. I need to find out what is going on and what our options are because what is happening is clearly not working as it should be. We tried to wean her off the Depakote and she ended up in ER. Now she's back on it, with full doses in her, and I'm still not liking it what I'm seeing. She's not getting therapy, she had to be pulled from school. This is all getting very old. It's a good thing she is so cute. Every time I think I'm going to go off the deep end because of it all, she gives me a smile that melts my heart - and that gives me the strength to keep going. I love you, Raquel!!

Liquid Meds Are A Good Thing

2010-06-15T06:29:00.000-07:00

After continuing to struggle getting full doses of the medication in Raquel, I, again, called the neurologist for some much needed support. Conversations with Dr. Mower seem to be on a weekly basis at this point. I'm very fortunate to have him so readily available.

I was actually nervous about having our most recent phone call because I've spoken with him so much since the ER visit and thought he would more than likely suggest changing the medication. Instead, he put in the order to try her on a liquid form of Depakote - something I didn't even know existed. I started giving her this last Friday and have to say that it is so much easier than the capsules. Even though it requires her to have one extra dose a day, each dose is only 1/2 of a teaspoon - something easily given by spoon in one gulp. I no longer question whether or not she's gotten her full dose. And the other day while shopping at Trader Joe's, one of their employees came up to me and commented on how great she looked. It's nice getting feedback from people that not only know what is going on for her but also see her on a somewhat regular basis and can notice the subtle changes.

Here are a couple pictures taken on Sunday. Mike thinks that every 4-year old girl needs to cruise around in a '56 Cadillac convertible.

She obviously agrees.

And here they are eating raspberries in our neighbor's yard. I swear we live next door to our very own farmer's market!

Next on the agenda is our neurology follow-up on the 21st. The 24-hour inpatient video EEG at Children's Hospital has been scheduled for August 16th, but at this point, I'm not sure Dr. Mower will want us to do this until her medication levels are stable for quite some time. I guess I'll find out next Tuesday.

Taking It One Day At A Time

2010-05-29T11:13:00.000-07:00

Raquel had a great week after her ER visit earlier this month. Once she got past being overly medicated that initial week, the second week was wonderful - no focals at all and she was my happy camper, eating well and getting back to her normal self.

The week after Mother's Day, the girls got the flu. It was impossible to get any meds in Raquel because she'd either throw them up or refuse the food in the first place because she didn't want to eat. Because of this, her medication levels dropped very low again and the focal seizures started to re-occur. I spoke with her neurologist, gave her an extra dose of meds, and that seemed to get her, again, back on track.

But Raquel continues to be a bit stubborn. It is getting harder and harder to get the meds in her. We are constantly having to rotate food items - the capsules can't be put in liquid and they can't be in anything that she has to chew. She is sick of yogurt, ice cream, pudding, applesauce. We've even tried baby food desserts. Sometimes Mike will literally have to hold her down and force it in her if it's been a very trying day for me. But if she gets all of her meds as prescribed, she does great. When she's only getting a half a dose here and half a dose there, we notice obvious changes. And since the medication costs over $100 per month now, we can't go around wasting the stuff.

Sleeping is back to normal, with her going to bed at the regular time and waking up bright-eyed and raring to go. And she's talking more and more, and clearly understands more and more, too.

We have our next follow-up with neurology on June 22nd, and the 24-hour video EEG monitoring has been scheduled for August 16th. I'm pretty nervous about that one - don't know exactly how I'm going to keep her confined to a room for 24-hours, but have a lot of confidence in Children's Hospital and have to trust that they know what they are doing and will help me get this done.

As for Gabby ... she continues to be the best big sister ever and really steps up to the plate and takes care of Raquel when needed. The seizure part really freaks her out, as it does me, but she's learning to deal with it better over time. Yesterday was her end of school party at The Wave Waterpark. She had a blast - and I had a blast seeing her have so much fun with her friends!

Here she is with the biggest snowcone ever! I swear the thing was as big as her head when she first got it...

Playing in the freezing cold water (I didn't go into that pool - she was mad at first)...

And here she is posing for me in the car on the way. I love you, Gabby!! I am so proud of you.

Looking forward to the long holiday weekend. Mike and Gabby are fishing today at Canyon Lake...

She's definitely Daddy's girl! :-)

Impetigo, Strep, Focal Seizures & An Ambulance Ride to ER

2010-05-02T12:36:00.000-07:00

What a fun week we've had.

Last weekend, the rash on Raquel's face continued to look worse and worse so Monday I took her to the pediatrician to find out about getting some kind of ointment. Mike was really sick with strep throat so I wanted her checked out to make sure she wasn't developing the same thing. Turns out that she has strep induced impetigo. We were given antibiotics plus a prescription ointment, which really seemed to help almost immediately.

I also picked up the brand name Depakote and began giving Raquel this instead of the much cheaper generic version. Again, we began to notice changes pretty quickly. She stopped looking at what I was trying to feed her and it was much easier giving her the meds. She also started waking up at her usual 7am time slot instead of sleeping in until 9:30am. It seemed like she was getting back to her old self.

Well, not exactly. I continued to notice these weird episodes where her eyes would kind of roll back and she appeared to "check out" for a few minutes. After speaking with the neurologist last week and him telling me that based on all of her test results, he thought it would be very unlikely that she'd be having true seizures, I just kind of dealt with it. But these episodes seemed to be getting a bit more frequent and gave me a very uncomfortable feeling.

Yesterday, I got her out of the bath around lunchtime and was changing her on the couch. An episode started that freaked me a bit, to the point where I called Mike to come help me. By the time he came into the living room, Raquel was sitting there watching television. He told me she was fine, that her body is adjusting to less medication and causing certain reactions.

Then it happened again last night in front of Mike. This time, it lasted longer and Mike thought she stopped breathing and was ready to start CPR but then she kind of snapped out of it. He took her outside but she was still out of sorts and very pale. He told me to hurry up and call 911. The paramedics were here within a couple of minutes and I rode with her in the ambulance down to the Emergency Room at Children's Hospital.

They immediately started an IV, gave her Ativan (I think) to calm her and did some blood tests as well as an EKG because her heart rate was really fluctuating. The EKG showed her heart was perfectly fine, but the blood tests showed that her Depakote levels were extremely low, and because of this, was triggering her to have focal seizures. ER spoke to her neurologist (not Dr. Mower but one in his group who was on call), and he wants us to stop the weaning process immediately. They gave her a double dose of Depakote through the IV last night, which took 30 minutes, then they monitored her for another hour after that to make sure her vitals were still okay. At 1:30am, we were finally discharged.

But she was so exhausted. She hadn't slept the entire night - even after getting the Ativan plus the Depakote through the IV. I thought for sure she'd sleep on the way home but not a chance. I finally got her to sleep close to 3am and expected her sleep long and hard, but she woke up 7am instead. She continues to be extremely medicated and is unable to keep her balance and falls down alot, so we've been confining her to a blanket surrounded by pillows.

Instead of eliminating the Depakote, the neurology department wants me to increase her morning dose to two capsules instead of one, and keep the nighttime dose at two capsules - until I can sit down with Dr. Mower and come up with some kind of game plan. The follow-up paperwork states that I need to see him within one week so I will call him first thing in the morning to schedule the appointment.

I hate seeing her so drugged but I guess that is better than her having the focal seizures. It was a very long night but at least we have a few more answers. We know that her heart is fine, her electrolyte levels are great, and now know why these seizures are happening in the first place. And I'm just really glad she's home and not still at the hospital.

Video EEG Monitoring

2010-04-23T06:44:00.000-07:00

Yesterday, after coming home to an obviously stressed and concerned respite worker, I called Raquel's neurologist again to get some much needed input.

Because the concerns I have now are pretty much the same prior to the weaning process, he is not linking the two together. I asked him if he thought she could possibly be having true seizures now and he said that was highly unlikely, that he feels she is just reacting to something when she has these seizure like episodes. I will be emailing him a picture of her rash as well as a video of her having one of her "things." Again, just love her neurologist. He makes himself so readily available and definitely takes my concerns very seriously. He always acts like he has all the time in the world to talk, and makes sure he's answered all my questions before we get off the phone. That means a lot.

Dr. Mower did put in a request for Raquel to have a Video EEG Monitoring done. This is a 24-hour inpatient test that will be done at Children's Hospital. She will once again become my little Smurf, but this time she will stay at the hospital and be video taped at the same time. I will, of course, be there with her during this process. The test will allow the doctor to see how she is acting and then compare it to what is going on in her brain at the same time. Unfortunately, we are on a waiting list and probably won't be able to have this done for a couple of months.

In the meantime, he's wants to eliminate the Depakote and replace it with something called Lamictal. At this point, I don't care what we use to wean her off - I just want her off of the meds. It breaks my heart to see her suffer and I am constantly asking myself how much more she must endure.

Glad we've made it to Friday. This morning, she woke up with a little bit of a sparkle in her eyes. Let's see what today brings...

In-Home Behavior Therapy Resumed

2010-04-20T15:29:00.001-07:00

Today we met with Mike, our new in-home behavior therapist. I think he's going to be really great. He came a noon today, and Raquel was overly tired and wanting to nap so he was able to observe a lot of the behaviors that are to be addressed. Each week, Mike will be giving us certain procedures that we will need to be consistent with throughout the week.

This week, my homework assignment is to implement a "Reward System" of sorts. The starting reinforcers are going to be: (1) Moose & Zee on Nick Jr (since they are one of her favorite things), (2) the swing, (3) the car, and (4) water. We will obviously be adding additional items as we develop the system. Mike wants me to take pictures of each of these items - similar to the PECS we were using - but to cut each picture in half like a puzzle. When Raquel does a behavior that she should be rewarded for, such as playing quietly, picking up toys, tapping my leg for attention, etc., I will give her one piece of the puzzle based on the activity I feel like doing, NOT what I think Raquel wants to do. When she is rewarded with the second piece for good behavior, we watch tv, play on the swing, go for a ride, or splash in the water. Mike specifically did not want "water" to be taking a bath and instead wants to keep that as part of our morning or bedtime routine. Again, whatever is the most convenient for ME.

This reward system is supposed to help Raquel learn what behaviors are acceptable and which ones aren't. And we are very soon only going to be acknowledging good behaviors. As Mike was observing me interact with Raquel during one of her episodes, I was saying, "Gentle hands" when she was hitting herself in the head. He said to no longer do that and instead to simply hold her hands preventing her from doing it, and to not make eye contact or use any vocal cues. By acknowledging what she was doing was reinforcing her to do it because she had what she wanted - all of my attention.

It's nice having some in-home help again and I look forward to meeting with him again next week and getting more input and ideas.

Back To The Herbalist

2010-04-19T13:36:00.000-07:00

As some of you know, I am a huge advocate for herbal medicine. I personally see my herbalist/iridologist if I have a concern before seeing my regular doctor. Herbal therapy has helped me through some really difficult times - miscarriages, carpel tunnel syndrome, depression, and anxiety attacks just to name a few.

At the very beginning of this process with Raquel, I did go with my gut and see my herbalist. I was told that Raquel was "switched", meaning she had a reversed polarity. As someone who was treated for this 15 years ago, I was not surprised, especially considering that I was switched when I gave birth to Raquel due to a stressful pregnancy (Mom being terminally ill and passing away shortly thereafter). And if you're switched during pregnancy, you typically pass this on to your unborn child.

What is reversed polarity? It's a disease of the physical electrical system. It effects the way your body deals with mentality, immunity, and just basically your overall general health. Keith Smith - my herbalist/iridologist says that: "A shift in the polarity of the body changes the way electrical conduction flows through the cells. Our body has a North and South Pole, just as the Earth. When something causes a shift in our system, our axis also changes, thus your poles have reversed, and your body cannot operate in the most perfect way."

Last Saturday morning - after dealing with a pretty horrific day on Friday - I decided to take Raquel to the herbalist to hopefully get something that would calm her down and help her deal with the Depakote withdrawals. The very first thing Keith asked me was if she was having problems with her bowels. I found that odd, but told him, yes, ever since the start of the medication nearly a year ago, Raquel has been plagued by chronic constipation. He said that the bumps around her mouth and on her lower cheeks tell him that her bowels are trying to self-regulate.

He then tested her and I was told, again, almost two years later, that she is switched. Talk about going full circle. How does the saying go? Hindsight is 20/20? I will not beat myself up for going the route I did. I am definitely relieved to have had the tests done and so many things ruled out. But I am going to keep her on the herbal program, have started a journal to document changes/patterns in behavior, and Keith will be monitoring her every 5 weeks. We don't see her neurologist again until July.

Keith did give me an herb for calming and I have to say, since giving it to Raquel, she is not suffering as much. The weekend was much better than last Friday, although she is still not sleeping like she should be. Last night I was up with her from 12:30am - 4:45am. That makes for very long days!

Tomorrow her new behavior therapist comes. That should be interesting...

Very Aggitated

2010-04-16T15:56:00.000-07:00

I have to say that so far this weaning process really sucks. And today is only the 3rd day. It is very apparent that she is experiencing withdrawals of sorts and it is extremely difficult to watch. It kind of brings me back to the very beginning of therapy when I had the most behavior hours because she was so hard to manage. At least now I have learned specific techniques to help her, but her "tantrums" for lack of a better word, are clearly not behavioral this time and instead appear to be reactions. She is very uncomfortable and requires constant attention. It is extremely hard to console her - and I'm pretty much the only one she wants during these trying times.

Here is a picture I took early this morning at Petco.

If you look closely, you can see spots on her face. She has broken out in a funky rash from her nose down. She doesn't appear to be bothered by them, but it certainly bothers me. I don't know exactly what is causing them but this morning when I was giving her the medicine, she kept spitting it out and I kept scooping it up and putting it back in her mouth. It is extremely important that we make sure she gets all of her medicine, even though we are tapering off. A sudden deprivation of it can cause full blown seizures, something I certainly don't want to provoke. When I was done, I noticed that she had white granules on her chin and around her lips. I'm wondering if the skin contact could be creating these bumps. It's quite possible because I know the medicine needs to be in food items that Raquel swallows and not chews. If she chews the granules, it can cause an irritation in her mouth and on her tongue.

On the positive side - the cup is half full, remember - I heard from a behavior therapist and he is coming on Tuesday at noon to meet Raquel and discuss the type of in-home program I'd like to get started. It sounds like very good timing...

Weaning Off The Depakote

2010-04-14T14:49:00.000-07:00

After speaking with Raquel's neurologist last night, he recommended that we start to slowly wean her off of the Depakote. We will give her 1/2 of her nightly dose for two weeks, then eliminate her morning dose for two weeks, and then remove her final nighttime dose altogether.

Even though I thought my lists of questions and concerns were pretty substantial, he didn't seem to feel anything was particularly alarming, and simply recommended weaning her off of the medication so we monitor changes in behavior. He didn't feel changing to a generic form of the drug would make that big of a difference because she isn't having true seizures. He said the doses weren't too close together like I thought they might be, but did say that very well could be why her sleep patterns have changed. My other concerns could certainly be side effects from the medication, but we won't know for sure until the meds are removed from her system.

Although I thought Raquel showed progress at the start of taking it almost a year ago, I've honestly felt recently that the vast majority of changes we were noticing were contributed to her maturing in age. And from day one I have been extremely concerned about side effects of the Depakote - both short and long term - especially considering the fact that she can't tell me what she is physically or mentally experiencing. And giving her the medicine has become very difficult. She looks intensely at what I'm feeding her to see if she can spot the white granules in her food, and if she does see them, she pierces her lips tightly together and shakes her head no. I guess that is her way of telling me she doesn't like how she feels once she takes it.

I kind of feel like we have come full circle with this and now are back to square one - with the exception of having more answers. I'm grateful tests are done, as difficult as they were, and am grateful that so many conditions have been ruled out based on her normal MRI and blood screens. All we know right now is that she has an abnormal EEG for some reason, which resembles a rare neurological disorder that can possibly be outgrown.

The weaning process began last night, so now we have to take things one day at a time. I'm planning on having her back in school on Monday.

Hi-Ho, Hi-Ho, Back To The Neurologist We Go

2010-04-12T14:55:00.000-07:00

For these last few weeks, Raquel has been a bit out of sorts. She was on Spring Break for two weeks and was supposed to go back to school today, but Mike and I decided last night to keep her out until we can at least talk to Dr. Mower, her neurologist, about the changes we are noticing. A lot of these things tend to happen when she is tired or upset, and since she spends a good portion of her time at school upset, we didn't feel it was in her best interest to be there right now.

I guess about 2 or 3 weeks ago, I began noticing big changes in her sleeping patterns. One night she woke up at 1am, bright eyed and bushy tailed, ready to start her day, which was very annoying since I had no plans of starting my day that early! Instead of going to bed at her usual 8 - 8:30pm time slot, she's been staying up until 9:30 - 10:00pm and then sleeping in much, much later. But even though she is sleeping in, she continues to nap at her regular time and sleep just as long as she normally does. Naptimes are still a really good thing!

Then last Friday, we were at the mall and I feel she got over stimulated by some rowdy kids in the play area. Typically when this happens, she will immediately sit down and act scared. This time, she walked over to me and when I picked her up and put her on my lap, she started throwing herself back, doing weird things with her mouth and jaw, and closing her eyes. It lasted very briefly and once we left the play area, she had some snacks and was back to her regular self. But she has continued to do this sporatically since Friday, and I would be lying if I said I wasn't freaked out by it.

This morning, we took her to see her regular pediatrician to rule out a cold. She's had a low grade fever and her throat sounds very raspy, so I wanted to make sure antibiotics weren't needed. Her doctor thinks she may have some kind of virus because of the gurgling sounds but said her throat isn't inflamed, her ears look perfect, and her lungs sound clear. She didn't think a sinus infection was going on because she doesn't have a runny nose, but admitted that she looked like she didn't feel 100% and to give her plenty of fluids and treat the fever with Tylenol.

Last night, I wrote out some questions/concerns for Dr. Mower so I wouldn't forget them when he called. The concerns are:

Depakote dosage times. I've changed it from giving her morning dose before school at 7:30am to once she gets home around 11:30am because of the medication giving her a headache. But by doing so, this means her nightly double dose is only 8 hours later, and something in the back of my head says that Dr. Mower wanted the morning and evening doses 12 hours apart.
For the past 1 1/2 months, the pharmacy has been substituting Depakote with a generic brand. When I asked my previous insurance why I had to pay $97 per month for her medication - instead of my $15 copay - they told me that Dr. Mower instructed them not to substitute Depakote for the generic form. I need to confirm this.
Sleep changes are a concern. She doesn't appear to get into a deep sleep at night anymore.
Twitching - restlessness. When I hug her, I often feel her shaking on the inside. She has a very hard time sitting still, even when eating. She seems very stressed and aggitated.
Balance issues. She's very unstable on her feet and clumbsy. She no longer tries to climb into the bathtub or on the couch. It appears that her depth perception is off.
Obviously, the mouth, jaw, eye thing is a huge concern.
She seems pale. I don't like her coloring at all.
I need to verify what pain medications are okay to give her with Depakote.

It's really hard because I don't know what side effects she is experiencing. I know that on the bottle it says it can cause drowsiness and dizziness, but Raquel can't tell me what is happening to her and as a mother, it is an overwhelmingly helpless feeling having to play the guessing game when so much is at stake.

But again, I continue to look at the cup as being half full and know that she was put here in my life to teach me something valuable and important. And I also know that I'm a stronger person because of this.

I'm hoping to hear from Dr. Mower very soon and get some much needed answers so my girl can continue making progress.

Good End To The Week

2010-03-12T14:10:00.000-08:00

When I picked up Raquel from school today, the aide walked her over to me and said, "She had an awesome day!" That was very encouraging - especially considering that on Wednesday her teacher said, "Boy, when she gets mad, she can really get mad!" when she was making the handoff. I definitely prefer to hear "awesome" over "mad".

At this point, I still don't know if Raquel is getting more out of school or if I am by being able to talk to parents in a similar situation. I think it can go either way right now. Raquel still loves going in the morning and happily walks to class, but she continues to be stubborn and wanting to do things her way. She refuses to talk to her speech therapist, which is very frustrating, but I probably wouldn't talk to her either. She's very hard to understand - even for me, a very fluent communicator. She's making progress in both APE and OT, and apparently getting more and more comfortable around the therapists she's seeing in these areas, so that's a good thing. The cup is half full, remember?

Regardless, it's great for Raquel to get out of the house and be around other kids and in a school setting. It's also good for me to be with the other parents - particularly the ones "new" to the system - and provide them with encouragement and support. One couple I met recently was terrified about having a respite worker come to the house and take care of their son. I shared some of my positive experiences with them, and they have agreed to try it out. Their first outing once a respite worker comes? They - husband and wife - want to go grocery shopping together. I thought that was really sweet, knowing how the simple things can mean so much in a situation like this. Another mother I met has been using her weekly respite to take her 7-year old daughter to the park so they can have a few hours of alone time.

Today I finally got the paperwork in the mail that I needed so Regional can schedule the behavior evaluation. Once this evaluation is completed, in-home sessions can hopefully resume again. It's just a long process. And I'm still on the waiting list to have her speech sessions done through Rady Children's, in addition to what she's getting through her school.

For me, I continue to notice big improvements in Raquel. She's more expressive vocally, and is clearly understanding speech more and more. The other morning, she didn't want to get up and Mike said, "C'mon, Raquel! Time to get ready for school!" She answered back plain as day, "Don't want to!" and layed back down in bed. She eventually did get up and we managed to get her to class just in time.

She is also working really well with our respite worker, Christy. The paperwork I received today still lists my monthly respite hours at 16, so the reduction hasn't taken place as of yet. I'm hoping they had a change of heart and are keeping them at 16 hours, but only time will tell. Christy tells me every week how much improvement she sees in her. We are going to start a binder to keep track of her progress because it's so easy to forget new words used or changes in simple things - especially for me since I am around her so much. And it will be nice to have something to show her neurologist at our next appointment.

Here are a couple of recent pictures from the "feed" store. They love going there to see all the baby animals - and, of course, Gabby has to make every moment the most dramatic.

Have a great weekend!

Don't Mean To Be Neglecting Raquel's Blog...

2010-02-13T11:10:00.001-08:00

... but looking at the date of my last entry, apparently I am. I don't know why I haven't been posting like usual except to blame lack of time. But that's just an excuse. So let's see... what's happened since we last "spoke"?

I met with the Regional Center for her yearly IPP. That went really well, with the exception of finding out that due to continued state budgets cuts, I'll be losing one of hour of respite care per week. That may not sound like a lot but it really is - especially considering I typically use my respite care to go to work. I don't know when the reduction will officially start, but right now I'm thinking around June. I've also started the paper trail to resume in-home therapy once again. Regional will be doing another psychological evaluation on Raquel in the next couple of months. During this evaluation, a behavior therapist will be present, and is the person who is responsible for setting up what type of in-home therapy program Raquel will have. Regardless of the type of service, I'm hoping to have a familiar face work with her once again.

We also had the neurological follow-up with Dr. Mower. He continues to be pleased with Raquel's progress - especially the fact that she understands language. He says that understanding communication is the precursor to expressing it. He doesn't want to make any adjustments at this point medication wise, and won't schedule another 24-hour EEG until she's been on Depakote for 2 years. Unless we feel that Raquel hits a plateau of sorts, he doesn't want to add Prednisone to the mix and will monitor how she does on Depakote in conjunction with regular speech therapy. We will continue to see Dr. Mower every 6 months. I just love our neurologist. After sitting through IEP meetings where she's so poorly assessed, meeting with Dr. Mower is truly a breath of fresh air. It's very apparent that Raquel is more than just a number to him.

As for school, well...she still really likes to go. She walks right over to her "friends" and happily walks with them to the classroom. But what happens IN the classroom continues to be a challenge for her teacher. When I picked her up one day this week, her teacher stopped me as I was leaving and said that eventually Raquel will learn that she's been teaching a long time. :-) I know Eva said she was up for a challenge - I just don't think she realized how much of one she was getting. She ended the week on a very good note yesterday, having a great day and a lot of fun during their school Valentine's Day party. Now she's off until Wednesday due to the holiday.

Thanks for your continued thoughts and prayers. Raquel is getting better every day because of them!

Happy Birthday, Raquel!

2010-01-12T14:55:00.000-08:00

It's hard to believe that my baby turned 4 years old today. It seems like only yesterday we were taking these pictures:

And then these:

And then the ones taken during all of the tests.

Coming out of anesthesia during the MRI...

... turning into my little Smurf for the 24-hour EEG...

... and becoming a pincushion during her allergy screen.

And now, here we are, four years later - just like that. It's amazing to think of where the time has gone. But at least the majority of tests are done, and I can display happier pictures, like their most recent school photos.

This is Raquel's very first school picture taken a couple months ago during preschool. We had no idea it was picture day, which is why her hair is such a mess, but I think the toussled look goes well with the pink tie-dye shirt!

And here's Gabby's 2nd Grade picture. She is getting way too big these days and is turning into such a little girl so fast that it catches me off guard sometimes. She continues to be the best big sister ever, oozing with patience and love for Raquel. She is also becoming more and more protective of her sister.

Raquel was a happy girl when I picked her up from school today. The assistant said she's doing good, but not off to as great of a start as the previous week ended. Oh well, everyone has their moments. Mike came home at lunch so we could celebrate her birthday then, since he'll be working late tonight. We opened a couple of gifts, played games, and decided to save the cake for after dinner. Gabby is looking forward to helping her blow out her candles.

Happy Birthday, Raquel! I love you! Keep making Mommy proud. :-)

Annual IEP Complete

2010-01-08T16:02:00.000-08:00

Yesterday afternoon, we had Raquel's yearly IEP with the school district, current therapists, and current teacher. It went okay. Amanda, the district psychologist and Eva, Raquel's teacher, are clearly trying to make this work, and I really appreciate that. But sometimes I feel they are the only ones that even hear a word I say. All of them continue to rush to judgement, assume they know Raquel better than her own parents, and look at me like I'm crazy when I contradict anything they say.

Yesterday I brought both Raquel's PECS book and therapy notes with me because Eva wanted to look through them. At one point during the IEP, Eva was reviewing her therapy notes that were taken. She stopped, got a bit choked up and said, "I can only imagine how hard this must be for you to sit here and listen to all of this when you know what she is capable of doing." I thanked her for acknowledging that. The binder doesn't lie, even though the school district gives it no merit. It's like I've made the notes up or something.

Again, I heard the APE therapist say she can't throw, can't do this, can't do that. She doesn't particularly believe me when I say otherwise and said, at one point, that I must be "confused" about what I was seeing. I guess playing catch with her and Gabby is all just part of my imagination. And yelling at them for jumping on the bed isn't happening either. Regardless, I do like Rachel, the APE therapist, and think it's great that even though most of the kids are only required 30 minutes of therapy once per week, she sees them twice per week because she's on campus two days overlapping the kids.

Speech therapy is becoming more of a challenge and I am apparently going to have to pay for sessions on my own. The new district therapist has such a strong accent, I can't even understand her. I was speechless listening to her explain Raquel's goals for 2010.

Last year I signed the IEP thinking it was a requirement. This year I chose not to sign all categories because I am not in agreement with the district's assessment. I did signed for the IEP goals, but wrote in my notes that it was only based on district observations and not her true ability.

Mike attended the IEP with me this time and I talked to him about it this morning. I was really proud of how he handled it. At one point, when I was clearly aggitated about a district person doubting what I was saying (because she hasn't seen or heard it with her eyes), Mike spoke up and reminded them that we have a really fantastic pediatric neurologist that 100% disagrees with Raquel's prior IEP, that she's had all of these tests done under his care, and that he feels this is a treatable, seizure related, neurological condition that has no impact on her IQ. I was really glad he was there. Don't get me wrong, I can definitely hold my own, but after a couple hours of going back and forth, it gets pretty old. And it was nice to have a hand to hold when things were hard to hear, even though I didn't agree with what they were saying.

I think a lot of the difficulty in class is simply Raquel adjusting to this type of school setting. It is much more structured than last year, the kids in her class are loud, and she's required to attend to tasks the class is participating in. And Raqi likes to do things when she feels like it.

But on the positive side, Eva and Amanda really stepped up to the plate, put together a Behavior Support Plan over the holiday break, and it was nice to finally get that implemented. If we are consistent both at school and at home, things will definitely improve.

The even more positive side is that Raquel had a really great week! When I picked her up today, the aide told me that she had another fantastic day - no behaviors, no problems - nothing. What great news!

I'm very relieved the IEP is over with. I'm very pleased the Behavior Support Plan is finally in place. And I am very happy with how she did in school this week - especially coming off of a long holiday break.

Next Tuesday, my little angel turns 4. Can't believe it! Then Thursday I meet with the Regional Center and will find out about how/if/when I can resume in-home behavior therapy. Then the following Tuesday, we have our next follow-up appointment with Raqi's neurologist. Looks like 2010 is off to a busy start!

Welcoming 2010

2010-01-03T11:16:00.000-08:00

When I look back at all I experienced in 2009, it's no wonder it felt so exhausting. It was. And I hadn't really thought about it all until yesterday afternoon when a very familiar face came for a visit - Janine, Raquel's former ABA supervisor. Although we've kept in touch since Raquel's last session on her third birthday, this was the first time we've seen each other since her in-home therapy ended.

Raquel was eating when she arrived, and I was very curious to see how she'd react to her being back in the house. Remember, when the ABA therapy first started, Janine was intentionally the "bad guy" and Raquel used to start crying as soon as she walked in the door. Raquel stopped eating when she came inside, and wanted out of her high chair. As soon as I put her down, Janine said, "Hey little buddy!" and Raquel looked at me and started crying. She clearly remembered Janine and associated her with "working" - almost a year later. Once we explained that she didn't have to work, she calmed right down and became very affectionate with her, giving her lots of hugs and kisses.

And both girls really enjoyed playing with Janine's dog, Escrow, who made himself right at home!

Janine couldn't believe how big Raquel has gotten - and what a head of hair she has! She was also very happy to see how I continue to hold my ground and fight the system that couldn't possibly make things any more difficult. She was also pleased to see how I am still able to stay consistent with Raquel and detach myself emotionally when I know she is just trying to get my attention, which happened yesterday when Janine and I were talking. She started a mini-tantrum that neither of us acknowledged, even though Raqi tried repeatedly to interrupt us. When I told her to knock it off, that we were talking, she eventually stopped and started playing with Escrow. But sitting on the floor with Janine listening to Raquel carry on certainly brought back a lot of memories.

Since I deal with Raquel 24/7, I don't always see the changes or how far we've come until it's pointed out to me. And yesterday I was reminded of it. I remembered at the start of ABA, how I couldn't even be in the room during therapy because I was so distracting to her. I remembered how the session sometimes only lasted ten minutes out of the two hours they were there because she was tantruming the rest of the time. I remembered the beanbag, the squashes, the tent, playing the song - over and over again, fighting to keep her sitting at the table, etc., etc. And I remembered all the tears I shed watching her struggle in the sessions and just praying for it to end. I thought about all of this quite a bit after she left.

I know there is still work to do and that we have a tough road ahead of us. I'll never deny that. But yesterday, thanks to Janine's visit, I was able to put things in perspective a bit. Although I will continue to fight the system in 2010, at least she is in a class with walking and talking kids, with a teacher willing to do whatever it takes to make this work. For that, I am truly grateful. I still question whether or not this is the best placement for her, but at least it is a good starting point. I know she is getting therapy, I know they are working on academics with her, and we have a meeting this Thursday to implement a Behavior Support Plan. And, because of the LKS diagnosis, Raquel may qualify for in-home therapy again, which would be wonderful.

As for me, I have promised myself that 2010 is going to be the year that I start doing things for me again. Me time is no longer going to be optional - it is now a requirement. And I've already registered for my kickboxing camp (http://www.turbokick.com/) this summer, thanks to a very supportive husband.

Janine and I talked about Raquel's "song" yesterday and how every time she hears it she immediately thinks of Raqi. Here's how Jason did it on Sesame Street the other day. Raquel loves when Elmo comes in (when Toca would!) and she just laughs and laughs and laughs.

Happy New Year everyone! Go Outdoors! :-)

1 in 91

2009-12-05T17:13:00.000-08:00

When I first started the autism journey two years ago, the statistics were that 1 in 150 kids were diagnosed with this condition. I thought that was pretty horrifying considering it used to be 1 in 10,000. Then I got my latest TACA (Talk About Curing Austim) Newsletter today and read the current stats: 1 in 91. Is it just me, or is that a pretty dramatic change for only 2 years?

I know the majority of pediatricians - including ours because I haven't found a DAN (Defeat Autism Now) doctor yet - deny that the immunizations have anything to do with causing autism. I personally feel they do and find it incoincidental that 99% of parents with autistic children noticed a change in their kids right around the 18-month mark, after the regularly scheduled MMR vaccination.

With the flu season already off to a really early and bad start, I've been going back and forth in my head about whether or not to give Raquel the H1N1 vaccine. In the TACA Newsletter today, there was a great article about this from Dr. Robert Sears. He explained the 4 vaccines, how they are given, the ingredients, how they are manufactured, etc. But then he said, "I do not recommend any more vaccines, including this one, for any child with autism" and went on to say that his biggest worry about the H1N1 vaccine is that it "requires two doses for kids 9 years and younger. When you add in the regular flu shot, that's 3 doses over a short time. There is no safety research that I know of that demonstrates the safety of 3 doses of a flu shot in one season. Plus, the swine flu product inserts very clearly state that there is NO safety or efficacy research yet."

That didn't give me a very warm feeling - especially considering I have a child with limited communication skills who can't explain any reactions/side effects she may be having. Raquel has a follow-up neurological appointment in mid-January, so I'll discuss this with Dr. Mower and get his input then.

I can't say enough about TACA and the amazing job they do. Check out their website at www.tacanow.org. If you are reading this, you more than likely know someone or a family affected by autism. Join TACA. Sign up for their newsletter. Educate yourself. Donate to the cause if you are able. Sponsor a family in need. Volunteer. Although Raquel is on the low end of the spectrum because of her sensory issues, she is still ON the spectrum. And I have promised myself to get more involved with TACA in 2010.

Okay, off my soap box...

Last Wednesday when I picked Raquel up from school, I overheard her teacher talking to another parent, saying that their kid was sick and shouldn't have been in school. A note came home in Raquel's backpack that day, reiterating the rules about how kids in the special ed class have lower immune systems and are not welcome when ill because another one can easily catch their sickness. Raquel woke up in the middle of the night with a fever. The next morning, the fever was lower but she was sneezing, coughing and had a runny nose - which has gotten progressively worse over the past few days. I am praying that she doesn't get a "hidden" sinus infection. I may be taking her to urgent care in the morning if there's not much improvement.

Hoping she's feeling better in the morning and that we can have a nice family day at home decorating for Christmas!

An End To A Very Long Week

2009-11-20T18:10:00.000-08:00

I don't know what it was about this week but it sure seemed long and Friday didn't come soon enough. I am so looking forward to what will hopefully be a restful weekend. Next week is Thanksgiving Break so there's no school. I'm actually looking forward to that, too.

Raquel ended the week on pretty much a good note. The teacher is still challenged by her "attitude", but is making progress. I found out today that the majority of her behaviors occur when she doesn't want to participate in what the class is doing - or, primarily, wanting to stop before the activity is done. The teacher requires Raquel, as she should, to sit there until the activity ends, to stay attended to what the rest of the class is doing. And we're not dealing with a task being a long period of time. Raquel continues to want to do things when she wants, how she wants - PERIOD. I think the only way the teacher is going to get past that is to continue to hold her own.

Last year in the orthopedic class, Raqi could wander around and do what she wanted. If she through a fit, they would take her to the sensory room and she could play in the ball pit. Not the same thing going on here. Now it's about following rules and instructions.

Here's a couple (blurry) pictures of Raquel in her Thanksgiving hat they made at school today. She humored me and kept it on the entire way home. I loved looking at her in my rear view mirror when I had to stop at the red lights.

This week has brought back a bunch of ABA memories for me - when Raquel was seen every day for in-home therapy. Just today when I was picking her up, she started to get aggitated and I said, "Oh, knock it off Raquel. I'm talking to your teacher." She immediately stopped and went off to the other kids. Another parent that was picking up her child said she wished she could do that, but she's just a softy. I told her it was because of the ABA - they taught me how to learn when Raquel was just "working it", and to not reinforce that behavior. I am truly grateful for my ABA Team and I miss them very much.

I've posted a lot before about how music really helps soothe Raquel - especially Jason Mraz and what I call her song - "I'm Yours." Almost a year after the in-home therapy has ended, I still get calls, emails, text messages from her former therapists saying for the most part, "I just heard her song on the radio! How's she doing?"

I have been very fortunate to watch Raqi's song played live many times and not once have I ever not thought of her - or the ABA therapy - when the song starts. It's amazing to see so many people sing every word and having such a good time about a happy song about love. And it's funny because no one would ever know why it's so special to me - what it's gotten us through in therapy and in life. I don't think anyone would believe it unless they have actually seen her reaction to it.

Here's how Raquel's song was played a couple days ago in Brazil - on one of Brazil's biggest talk/variety shows called Faustao, with an average viewing audience of 40 million people!! Sure wish I was at this one. Brazil knows how to put it on! Great job you guys!

"I Fought The Teacher and I Won!"

2009-11-16T14:43:00.000-08:00

At least she won today. Her teacher was out sick most of last week and today was her first day back after nearly catching pneumonia. Let's just say that Raquel didn't take it easy on her. When Eva (her teacher) handed her over to me and I asked her as I do every day how she did, she gave me a look, paused, then said, "Great - as long as she was doing something she wanted to do when she wanted to do it." At that point, Raquel cracked up laughing and I asked her what was so funny. Eva replied: "She's saying, Mom, I fought the teacher and I won!" I really hope Eva had a restful lunch before starting her afternoon class. The aide did tell me that most of the kids seemed a bit out of sorts today - probably because of the weekend off.

I know I haven't posted for awhile and that most of you are assuming (or hoping) that things have been moving right along. They're moving - don't get me wrong - but not really in the direction I had hoped. Raquel continues to be her stubborn self and the teachers/aides continue to struggle with what works and what doesn't.

As a parent, this is one of the hardest positions to be in. Dealing with daily therapy in addition to the weekly ones provided me with a lot of tools I can use to handle Raquel. And now that she's just a number in the district, we're back to square one. No one around her knows the signs of her getting aggitated, or how to effectively redirect her. Last Friday when I picked her up, she was carrying on in the parking lot with the substitute teacher, who was really happy to see me.

By no means am I implying that this is an isolated situation geared towards me personally. This is just how the transition works. You go from dealing with all of these wonderful therapists in your home on a daily (and/or weekly) basis, showing you how to manage challenging situations, and then once your child turns three, you are expected to put them on the bus both directions and hope for the best. It's scary to think of all the information I would not have been privy to if I would have done just that. My personal opinion: the transition needs to take place months before their 3rd birthday so everyone is aware of a child's individual needs, teacher's questions can be answered by those that have worked with her and actually know her best, and that everyone can work together to find the most appropriate class placement. Maybe one day it will work that way.

This is pretty much the last opportunity for my district - and they know this. If this class is the best they have to offer, and we continue to take two steps forward and one step back, I'll need to bite the bullet and start over in another district. I will say that because they know that I am at the end of my rope, they are bending over backwards to make this work. Last week, the principal personally worked with Raquel for about an hour one day, and then when Eva got ill, the principal had the district psychologist come and work with her in the classroom to help the substitutes deal with any behaviors that may have occurred.

Last Friday we were supposed to have an IEP and put together a Behavior Support Plan (BSP), but that was cancelled because the teacher was sick. I'm still waiting for the reschedule date, but am feeling pretty good about it right now. This new panel of people I am fortunately dealing with seem to understand my concerns, and, even seem a bit irritated by how things have been handled thus far. I think that once they get my input for the BSP, things will flow a bit better. I am also planning on having my regular respite worker, Christy, attend class a couple times a week after the Thanksgiving break to show them what works for her when she's taking care of Raquel. I would go in a heartbeat but everyone tells me I'd be too distracting and that she needs to associate school with mom not being there. I understand their point.

The good news is that Raquel really seems to like going to school. Every morning when I ask if she's ready to go, she runs to the back door with a big smile on her face. Once we get there, she stops and greets her previous class, and then walks with her new class to their room without the slightest hesitation. With the exception of last week, she seems perfectly content when I pick her up, grinning from ear to ear when she first spots me at the fence waiting for her. And I think going to school every day is a great thing for her. She needs to get out of the house and be around other kids.

At home, Raquel continues to be a difficult piece of work to figure out. Sometimes I think she's just messing with me. The other day, she said, "What are you doing?" as plain as day, so much that I automatically answered her question before realizing who it came from. When I said, "Are you talking to Mommy?", she smiled and went back to what she was doing. She really does have a mind of her own. I wonder where she gets that from. :-)

Hoping she'll have a better report card tomorrow, but am still feeling optimistic and am pleased that she has a teacher who is up for a challenge.

Liking School - For The Most Part

2009-11-03T14:08:00.000-08:00

Last week, Raquel started her new class at Rock Springs. I was pretty much a basket case the night before - not able to sleep and I kept doubting my decision to put her back in school.

What's the big deal about her being in school a few hours a day? Well, I am very protective of my girl(s) and the fact that Raquel cannot tell me about her day and what happened means that I need to have a great deal of trust and confidence in the people surrounding her. That's a tough one for me because I know how difficult she can be and how the slightest things can trigger behaviors. And I also know how simple behaviors can escalate into self-injuring ones if she's not redirected right away.

Mike came with me on her first day for moral support. That's what he said, anyway, but I really think he wanted to go to make sure I actually took her. :-) As soon as we got her out of the car, the bus driver spotted saw her and yelled, "Hey! Raqi!!" and Raquel cracked a big grin and started to laugh. It was very apparent that she knew exactly where she was. She then went over to the orthopedic class, who were waiting for their teacher to come get them, and they all seemed very happy to see Raquel and Raquel definitely recognized them.

The first day, I waited by the phone expecting her new teacher to call me to come get her. She never called. In fact, she hasn't called me once since she started back in school. She told me that she has promised herself not to call me and to, instead, work through the behaviors. Of course, there is a transition period and Raquel is beyond stubborn and wants to do things her way and when she wants to do them. But, her teacher is equally as stubborn and doesn't give in. And I think that is a really good thing. Raquel needs to learn that things can't always be on her terms. That just isn't how life works.

Raquel has now resumed all therapy in a school setting - speech, occupational, and physical therapy (they call it applied physical education now). I have not heard back from Rady Children's about scheduling speech sessions through our private insurance company but think this is still the only way I can honestly sit in front of Raquel's neurologist in January and say that she's had therapy. The new district speech therapist is very new - right out of college, actually - and has no experience working with kids who have special needs.

But, the cup continues to be half full. Raquel is talking more and more, tantrums are less frequent, and she's turning into such a beautiful little girl. I love her more than words can say. I am truly blessed to be her Mom.

Here are a couple of pictures from Halloween:

Gabby & her friend not wanting to pose for my pictures....

... until I told them they couldn't go to the carnival until they did...

... Raquel and her Dad....

... And me and my girl.

Raquel can be such a handful at times, and drains enormous amounts of my energy on a daily basis, but I never lose track of the importance of what I am doing and fighting for. And I refuse to give up. My Mom didn't raise a quitter and I know that she is really proud of me right now. But I'm sure she's telling everyone in Heaven that it's because of her I'm like this. :-)

The Dog Ate Her ... Shoe?

2009-10-27T14:22:00.000-07:00

That's the only thing I can come up with at this point. I've searched high and low, inside and outside, under the couch, in the car - everywhere a little toddler size six shoe could possibly be but nothing, nada, zilch, zip.

So what's the big deal about a shoe? Well, a lot actually. Because of Raquel's low muscle tone, she is a very clumbsy walker. All the cute, clunky shoes - that I love and wear - don't work for her because she trips easily. She needs simple stuff. And simple is not always that easy.

For starters, like any shoe, it has to be comfortable. But Raquel can't tell me if her shoe hurts - and because of her sensory issues, she has a pretty high pain threshold - so I only find out if a shoe is not working by seeing blisters or sores on her feet after I've taken off a new pair. The shoe also has to be convenient, meaning velcro and not a bunch of laces because they constantly have to be put back on because she takes them off. The P.E. therapist prefers certain styles, and I've payed a pretty penny on Converse shoes, but those don't work for me on a daily basis. In fact, I would typically pack those in her backpack and tell the teacher to put them on for therapy. Again, I need to pick my battles here and fighting to put shoes on first thing in the morning is definitely not one of them.

I finally got the health form signed by the pediatrician stating that Raquel has nut allergies and needs to have the Epi-Pen at the school nurse's office. Why that took 4 days, no idea. Then her new teacher got sick and then had an IEP and I didn't feel comfortable putting her into her class with an unknown substitute. The teacher didn't like that idea either. So today was going to be her first day back to school ... until the missing shoe came in to play. By the time I was done searching, her class had already started, I was beyond irritated on top of not feeling well in the first place, and Mike just had to get to work.

By no means do I want you to think that my girl is shoe deprived. I would never allow that, being the shoe freak that I am. She has plenty - just ones that aren't suitable to wear to school in a new environment and walking around unfamiliar things. We prefer to have her barefoot to prevent her tripping and we introduce new shoes gradually, but this is not an option in class.

Tomorrow, she will start her new class - in an old pair that I'm not real happy about - and then I will continue to search for some new ones. It's always something, I guess...

A Very Special Wedding

2009-10-19T17:50:00.000-07:00

One of the hardest things (for me) in dealing with a child who has special needs is finding enough time - and energy - to effectively parent Gabby. Even though she absolutely cherishes Raquel and probably wouldn't change a thing about her, I often feel that she gets the short end of the stick. I am always trying to think of ways to make her feel not only loved and appreciated, but also ways that she can shine on her own so things aren't "always about Raquel." (Yes, she does say that...)

A couple of months ago, Mike's cousin, Morgan, called and asked Gabby if she would be a flower girl in his upcoming wedding. Besides being honored that he thought of her to do this, I knew this was my golden opportunity to make her feel like a million bucks. Even though she likes to play in the dirt, Gabby is definitely all girl - it's all about the pretty dresses & shoes, hats & purses, glitter & make up, etc., etc. In fact, she can be too girly for me at times. But I promised myself that I would go overboard with the wedding experience and let her enjoy every moment.

I have to say that she definitely enjoyed it, but it wasn't exactly how I had planned. When I took her to David's Bridal to get fitted for her dress, she insisted that Raquel come with us. After not being able to convince her otherwise (over the course of several days, mind you), the three of us went. Gabby had more fun watching Raquel chase after herself in all the mirrors than she did getting pampered by the bridal staff. She cried when we left her at my in-laws to go to the rehearsal dinner because she wanted her to go with us, and she was very sad to leave her behind to go to the wedding because she wanted Raquel to watch her throw the rose petals. I can't tell you how many times she asked me, "How do you think Raquel is doing?" Even when out and having a good time, her thoughts always come back to Raquel. I think that is very sweet, and it also says a lot about their relationship.

It also made me realize something: I've been trying too hard to make Gabby feel like she has a "normal" life, if that makes any sense. This IS our normal life. Raquel IS her reality and by me trying to act like it should be different must be a bit confusing. Gabby knows Raquel is special in her own way and has certain limitations, but it doesn't change the fact that she's her little sister. And she loves her little sister more than anything. Instead of trying to shelter her from the situation, I've decided that I just need to acknowledge the little things more. For instance... She just handed me a note saying that I'm arrested and owe her $1,000. I asked her why she was arresting me and she said it was because I stole a pair of yellow shoes. I said, "Yellow?" and she said - "and they were the wrong size, Mom." LOL But she was beaming while "arresting" me and was happy to be the center of my attention, even if it was only for a short time.

The wedding was absolutely beautiful, and Gabby was definitely pampered. It started with getting her hair styled by Kelly at Kids Kuts - my very favorite place to take her. Kelly is awesome and makes it such a great experience (because she "just loves hair!").

I love watching Gabby's eyes get as big as silver dollars whenever she pulls out the hair glitter. She knew Gabby was getting ready for the wedding and made it extra special for her. Thank you, Kelly! Because of all the gel and goop you put in there, her hair didn't budge one bit and looked just like when we left you, all day, all night - and in the morning, too. :-)

Once we got to the winery for pictures hours before the ceremony, Gabby started to really get into the wedding party mode. She got dressed upstairs with the bride and bridesmaids, drank apple cider from champagne glasses, and was secluded from everyone with the rest of them 30 minutes prior to the big event. I didn't even see her at this point. But once the wedding started and Morgan stood on the platform in front of us, he called to me and said that Gabby was absolutely glowing. I think she redefined the word "glow." I was so proud of her for doing such a great job.

Thank you, Morgan, for giving Gabby such a special role in your wedding. We really appreciate you thinking of her. And thank you, Karin, for allowing her to be a part of the whole experience. It's something that she will cherish and remember always. We wish you much love and happiness in your new life together.

========================================================

SIDE NOTE: This morning, Mike & I met with the school district, teachers, and therapists. After 3 hours of discussion, we have agreed to have Raquel resume school at Rock Springs in the regular special education class - with walking and talking kids. Our new Special Ed Program Specialist seemed genuinely concerned about the district not providing services. She also was very understanding as to why I had made the decision to keep her out of school. Two weeks after she starts, we meet again to make adjustments and put together a behavior support plan (BSP). As soon as one form gets completed by her pediatrician, she can start. I'm thinking right now that will probably be Wednesday.

A Post From Mike's Cousin

2009-10-12T15:22:00.000-07:00

My name is Sandy and I am Mike's cousin from Buffalo. I asked Nita if I could make an entry on her blog.

From the end of August into the second week in September, my boyfriend, Dennis and I went out West for a vacation. While we were there, we visited quite a bit with Mike, Nita and the girls. I had last seen Raqi when she was 3 months old. She was adorable then and is so much more now. She has a smile that will melt your heart. To be honest, I was leary about going as I didn't want to upset her or throw off her routine.

Well.....when we first pulled up, Mike was holding Raqi outside in the driveway and when she saw us she started bouncing up and down in his arms and clapping. I realized then that my worry was all for naught. Raqi came right to me and gave me lots of hugs and kisses. I would like to think she remembered back to when she was a baby and all the cuddle time the two of us had shared.

It took her a little while to get to where she would curl up with Dennis but she eventually did. We left that evening and went to Las Vegas. While we were there, Dennis won a HUGE ball for Raqi and Gabby. Needless to say, when he gave it to them they just loved it. It was big, bright and bouncy – perfect for Raqi.

We had many fun times during those two weeks even though we were there on and off – we took a cruise and Dennis had a Navy reunion as well, so we were in and out. ….Along with the good times, there were some bad ones, I will admit. I shed many tears watching that sweet little girl get so angry and upset as she was so frustrated because she was trying to communicate a thought or wish to no avail. She tries too hard to get across whatever is on her mind, and when she can't - unfortunately she lets people know, as we all do at times.

But even when she is very angry or frustrated, I see her look at the person she is trying to communicate with: Mike, Nita, Gabby and even myself and Dennis, with true love and tenderness in her expression. Raqi stares you right in the eyes with such conviction and intensity she seems to be apologizing for her temper. She doesn't mean to hurt anyone at all. She is looking to all of us for help and understanding. We have to relay her message for her until she can.

I will admit with her limited vocal skills she can be a handful. I don't know how Mike and especially Nita do it day in and day out. But they are absolutely wonderful with her. Nita is never tiring – juggling work, a home (we all know how time consuming that is in and of itself), making sure Gabby Girl gets her own time, and trying to fight the system to get the help for that sweet innocent child. You have my sincerest admiration and respect, Sweetie. I don't think I would have the strength to do what you do day in and day out. In fact, I know I wouldn't. You are a very special Mom.

You all keep up with the amazing job you are doing. Mike - be strong and keep loving your girls. They need you. Gabby Girl – stay sweet and be the best big sister you can. Raqi – hang in there, baby. You will get the help you need. Mommy and Daddy will see to it. Nita – Don't give up. You keep fighting the system until you get someone to help you. You are her voice; speak it loud and strong. If you need help call me. I'll come and help!!!

You are my Heroes and I love you all very much.

Speech Evaluation Complete

2009-09-28T14:57:00.000-07:00

I've said it before and I'm sure I'll say it again - when you are dealing with Rady Children's Hospital, you are dealing with a bunch of great people.

This morning, Raquel had her initial speech evaluation at their Oceanside Speech & Language Center. I didn't know what to expect, and was a bit concerned because Raquel woke up at 5am, but as soon as I was greeted by Danielle, the speech therapist/evaluator, I knew I was in wonderful hands.

Although she has only been at Rady's for a little over a month, she has worked in a similar position in Los Angeles for, I think, eight years, and specializes in treating preschool aged children, primarily dealing with Autism and Apraxia. She's also trained therapists for the ABA Program, so she was extremely familiar with the therapy structure Raquel had, and was able to provide me with her observations, recommendations, and feedback.

The session didn't particularly start out that great. She took us into a tiny room - again, Raquel doesn't like being confined - and it really wasn't a kid friendly place. Toys were definitely present, but Raquel wanted to play with the phone, the computer, the desk drawer, her files - everything she wasn't supposed to get into. This eventually turned into a game with her: she'd reach for something she knew she shouldn't have and look at me with a big smile on her face. Danielle commented on how her teasing nature was very age appropriate, but then moved us to a different room across the hall that didn't have all the distractions.

Once moved, Danielle tried repeatedly to engage Raquel in some play activities, but Raquel kept coming back to me. Once I told Danielle that it takes awhile for Raquel to warm up to someone new, and that too many toys being out are over-stimulating to her, she decided it would be best to observe her interacting with me instead. She watched how Raquel responded to me reading a book to her. I'd tell her to turn the page, and she would, and she really focused on the pictures and then would look up and make eye contact at me, making the activity a shared one. She also started to talk some, and once she got up and started moving around, the speech increased. Danielle said that this signifies that she is at a specific level of speech development - when gross motor and speech are linked together. This typically happens at the year to year and a half age range.

After being there well over an hour and a half, Raquel became tired and obviously wanted to leave. No tantrum or anything, she was just ready to go. As soon as I stood up and grabbed my purse, she got a big smile on her face, high fiving Danielle as we walked out the door.

Since Danielle treats Autistic kids primarily, I had to ask the question that I've asked all the others: "Do you see Raquel as being Autistic?" Without slight hesitation, she said she didn't, that she understood she was given the diagnosis of Mild Pervasive Developmental Disorder, but feels that was primarily due to her sensory issues. Even if PDD is her true diagnosis, she said that it is on the lowest end of the Austistic Spectrum. Her opinion - at this point - is that this is a seizure triggered neurological condition. And she did stress the importance of the fact that their job is not to make a diagnosis, but to treat the condition. We are also going to be resuming the PECS (Picture Exchange Communication System).

What's next? Danielle has to put together a report and figure out a game plan. She did tell me that she didn't feel a longer session would be to Raquel's benefit at this point because of her short attention span. I should hear back from Rady Children's in a couple weeks to work out the scheduling. I am hoping Danielle will be able to continue treating her, but feel very confident that if it's someone new, they will be highly qualified.

A Nice Family Day

2009-09-27T13:55:00.000-07:00

I absolutely love Sundays - especially when I am able to have a nice, quiet day with the family. Mike has been working every Saturday, so it's really nice when the four of us can hang out, be together and catch up on the simple things.

This morning, Mike surprised me by packing breakfast and a blanket, and taking us to the park for an early picnic. It was a beautiful day and we had so much fun. The girls played - and posed - on the swings...

... went on the slides...

... until Raquel didn't want to slide anymore...

... posed for me in the tunnel...

And I took some cute pictures of the girls with dad.

One side note... Raquel will have a speech session/evaluation tomorrow at Rady Children's in Oceanside. I really don't know what to expect but am told that this particular therapist - although very new to the group - specializes in preschool aged children. I'm assuming this means she'll have toys to entice Raquel with. Mike and I have been noticing more speech coming out of Raquel, so I'm very excited to finally get her back in regular sessions. We see her neurologist again in January and I am going to be pushing for weekly sessions until then. Wish us luck. I'll take pictures if they let me. It's really fascinating to watch the therapy process and see how they are able to extract language from her. But I still wish we had Mary for speech therapy again...

... but I promise to go to tomorrow's session with an open mind. :-)

Respite Care? What Respite Care?

2009-09-21T16:22:00.000-07:00

Just when I think I've found another replacement for another replacement, everything backfires on me. What a frustrating few (?) weeks it has been.

My regular respite worker has taken an indefinite leave of absence due to family illness. I completely understand that and wish her the absolute best. When the agency called to notify me of this many, MANY weeks ago, they stressed the importance of finding someone extremely reliable and who was able to deal with a child who has special needs outside of the "austistic" spectrum.

All of the replacements that have shown up appear to be very nice and able to effectively deal with Raquel for 4 hours once per week. At least that is what the agency tells me. All have been very polite and obviously "kid" people, and Raquel has appeared to take to each of them - probably because she's used to her previous therapists coming and going on a daily basis. Each of them seem fine when leaving, telling me how great Raquel is/was during their shift, and then I get the call from the agency saying they won't be back.

Take today for example. I came home to find a sleeping Raquel and what appeared to be a very content respite worker. She took her for a walk, went on the swing, got her to sleep and all was well. She said she wasn't a problem at all, didn't have any issues, etc. and looked forward to seeing us again on Wednesday (I get to have two days this week because I haven't had care for so long). Then I get the call from the agency stating that it's not going to work, that Raquel was too difficult, and that they need to find a better match. I was very surprised - especially considering I asked about her behavior issues and she said she was not a problem. I asked the agency specifically what she found was so difficult and was told that at one point Raquel became aggitated and began kicking her feet on the ground. I know I've been dealing with Raquel's behaviors for a long time, but this is Sensory 101 here. If you are told you are going to be watching a child with sensory issues, you really should know how to redirect the behavior.

I then asked about the other "replacements" and was told we were too far away, the day/time interferes with their school schedules, etc. etc. etc. SO FRUSTRATING. Again, back to square one. And I really don't like having different people in the house all the time. Typically when a new person starts, I make sure Gabby is home to help - and so she can tell me how it really went. But, I have to pay for them watching Gabby so that takes out of the whole respite being a relief. Plus, Gabby is back in school so this is no longer an option.

I also spoke with Regional today. They called to let me know that due to budget cuts, I no longer have my Educational Consultant, Bev, who was a tremendous help to me during the transition from therapy to the school district system.

And speaking of the school district, they still have not returned my call from the first week of August when I asked for a meeting to discuss Raquel's placement prior to the start of school. Of course, I'm not surprised.

Daycare down the street didn't start either since I don't have a respite worker that can attend class with her. Or one that effectively knows how to redirect her for that matter. The whole point of one going with her was to show them how to handle the behaviors, but until I can find someone who can deal with them on their own, there is no sense for me to waste not only money on daycare costs but also use up a day of much needed respite care.

Feeling pretty beat up today, but on a very positive note, had a great first teacher conference with Gabby this morning. Got some great input and advice, and Gabby really made me proud showing off all she's learned over the first 5 weeks of school!

Looking forward to a relaxing night with the family - and promising myself to take things one day at a time.

Starting Daycare

2009-09-02T14:00:00.000-07:00

Today, I coincidentally ran into Gabby's old daycare provider at the grocery store. She asked about Raquel (who was with me) and I told her about the struggles I've been having with the school district and asked her if she had any part-time openings. She does and Raquel will be starting her daycare on September 16th. We are taking baby steps at this and she will be going for only 4 hours, once per week until we feel she is ready to add more days. She will also be going with my respite worker at first so she can show them appropriate ways to deal with her special needs. The reason I am having my respite worker do this instead of going myself is because we all feel that I would be too big of a distraction. And attending daycare and school is about being around other kids instead of Mom.

It's definitely a start - and I'm really happy about it. Plus, the daycare is walking distance from our house.

As far as therapy goes, OT is still in the works. Karin is approved under my insurance but for PPOs not HMOs so I'm still dealing with getting that worked out. But Raquel has her first speech session on the 9th, one week from today, with a therapist named Danielle who specializes in preschool kids.

Such a slow process with all of this but slow and steady wins the race, right? That's what I'm going with at least. And we WILL win this race.

Back To School?

2009-08-22T11:23:00.000-07:00

Deciding what to do about Raquel's school situation has been a real challenge for me over the summer. I've gone back and forth in my head time and again. It's been one of those things that you wake up at 2am thinking about and can't go back to sleep.

Last week, after having a heartfelt conversation with Gabby about Raquel, I have finally come to a decision: she will not be attending the orthopedic class at Rock Springs - the only class that our school district seems to feel is available to her. And Gabby was definitely the deciding factor. She has such a special bond with her sister and although they don't have a "typical" sister-sister relationship because of Raquel's current limitations, they have a very real connection with each other and I love watching them interact - even when fighting. I keep reminding Gabby about how paybacks work, and Raquel continues to grow and is quickly approaching Gabby's height so I know what's coming...

I was told by my original behavior therapist, Elizabeth, very early on in this journey, that Gabby's perception of things is a lot more realistic to what Raquel's perception is vs. what I think it is. I have never forgotten that and it was one of the greatest pieces of advice I have been given throughout all of this. Whenever Gabby tells me what she thinks her sister needs, wants, or is thinking, I don't take it lightly.

The other day, I sat Gabby down in a pretty adult manner, and told her that I needed her help deciding what to do with Raquel and her school. I presented the options (the ortho class, finding a daycare, keeping her home, etc.) and asked for her input. She listened intently and became very serious, really understanding the importance of this. When I asked her what she thought I should do, she said, "How about this, Mom? Let's keep her out until January when she turns 4." I wasn't expecting that response at all and didn't know where it was coming from, so I asked her to continue. And a lot of really cool stuff came out that I wasn't thinking about. She said that she can't go back to the ortho class, that not only does the neurologist not recommend it, but she reminded me that since she has been out of school over the course of the summer, Raquel no longer makes the moaning sounds that she picked up from the other kids, and she no longer does certain behaviors that were, again, picked up from the class. That's a very valid point. I always looked at the cup as being half full with the sounds/behaviors and was glad that she had the ability to "model" after other kids. But Gabby is 100% correct - she no longer does these things, and now I wonder what she WOULD be doing if she was around typically developing children.

Gabby also told me that we keep noticing more and more improvements with her being on the medication, that she's not going to have a consistent school schedule anyways because the holidays are coming up (YIKES!) and she'll have a lot of time off, and it will be January very soon. She said that I need to keep her on the medication, get speech therapy going as soon as possible because Dr. Mower says that is really important right now, and then see what he says when we see him again in early January. Gabby thinks that if we continue to work hard with Raquel, she will be ready for a more suitable program when she turns 4.

That was a lot to take in from a 7-year old, but she's right. She doesn't belong in that class and it's not fair to her to put her there just because I want her around other kids, or because I need a break. I need to be selective about the kids she's around for her own benefit. I need to think about what is best for Raquel instead of what is best for everyone else.

So, I've decided that she won't start on Monday as planned. And I'm getting closer to starting up therapy. Since her pediatrician wouldn't sign the authorization form and it had to come from a specialist, her file needs to be re-evaluated by Rady Children's to verify services are in need. More and more paperwork, but I'm getting pretty good at staying on top of it and getting my calls returned. Karin has already agreed to resume occupational therapy and since she has treated Raquel before, does not need to do any evaluations, so once I get the go-ahead from my insurance company, it should be a pretty easy process. My goal for next week is finding a speech therapist that specializes in preschool children and getting the process going - PERIOD. A lot of wasted time this summer that I wasn't planning on, but that's how it goes. I'm just doing the best I can and taking it one day at a time, and not looking back with regrets.

Neurological Follow-Up Complete

2009-08-04T12:47:00.000-07:00

This morning Raquel saw Dr. Mower for her neurological follow-up appointment. He continues to be optimistic about how things are progressing. He was a little irritated about the lack of therapy she has been receiving by the school district and gave me a Doctor's Orders note to give them which basically states that "Raquel REQUIRES speech and OT therapy as mandated by her IEP" and to provide for these services. He also told us that this is a legal matter, that they are obligated to provide therapy and can be taken to court for failing to do so.

The reason for his displeasure with her not receiving therapy is that he was not able to effectively track her progress. Depakote and speech therapy work hand in hand and he wanted to observe Raquel for 6 months on the medication with regular therapy to see if he feels it is working. If after the 6 months she continues to be non-verbal, he'd begin to start modifying her treatment.

I also gave him the phone number to my HMO Group so he can sign the paperwork authorizing services outside of the district setting. I want to get these going as soon as possible. And my reality about the district therapy is this: how will I ever know it's being done? Raquel can't tell me, I'm not allowed to be there when it takes place, and the only reason I even found out it wasn't being done in the first place was by drilling the teachers and bus drivers and asking tons and tons of questions. By doing therapy through my own private insurance, I will be allowed to screen them and find one that I feel is a good match. Speech therapy right now is critical and we need to have a therapist who is up for a challenge and will work at developing a special connection with Raquel and not just showing up for "work". It's also very important that I find one that deals primarily with preschool kids and not middle school ones.

Dr. Mower wants to see Raquel again in another 6 months and at that point we'll discuss possibly adding another medication if her speech has not improved. No 24-hour EEG for at least another 6-9 months. He gave us the blood work request so he can check not only the Depakote levels but also her liver functioning. I'll do this later this week.

Understanding Words

2009-08-03T13:30:00.000-07:00

This morning, I heard Raquel starting to wake up in her room. I love when everyone is still sleeping and I'm able to be with Raquel alone when things are nice and quiet. I was laying there with her, giving her little kisses and said, "I love you." She gave me a slight smile, and I asked her if she knew what it meant when I said that to her. She nodded her head yes and gave me a big grin. Then I said, "And you love Mommy, right?" She continued to smile and then began lightly stroking my face. I am convinced that she understands words and the time I had with her this morning was very rewarding.

We have our next neurological follow-up tomorrow. I'm really looking forward to getting Dr. Mower's input. I've also spoken with our insurance company and they have confirmed that they will accept a therapy authorization from him instead of Raquel's primary pediatrician (since she refused to sign the paperwork.) Once they get his authorization, I will receive a list of local speech and occupational therapists that I can choose from, and then it's as simple as calling them and scheduling the appointment. I'm hoping to have her in weekly speech sessions and then OT every other week. I've also left a message with Regional to see how I go about getting my copayments reinbursed because those will add up pretty quickly.

I still haven't decided what to do with her regarding school. I know Dr. Mower won't recommend keeping her in the orthopedic class tomorrow when we see him, but it's so hard to find a "place" for her. This morning I was talking to Mike about it and mentioned putting her in the daycare down the street. He quickly reminded me that I can't even handle her at times and that she needs a special kind of place with special kind of people working there. If anyone knows of such a place, or where I can find one, please let me know.

Raquel continues to be the most difficult at the 10:30am time slot. I still think it might be a blood sugar thing and am curious as to what her neurologist will have to say about it. This past weekend wasn't the best and I had a really hard time redirecting her. And the hitting and scratching and biting was back. I should own stock in makeup concealer by now. :-) But she continues to grow and progress and overall, I'm very pleased with the results of the medication. We'll see what recommendations Dr. Mower has tomorrow. Wish us luck!

A Really Nice Day

2009-07-28T14:20:00.001-07:00

I'm starting to think that a good portion of Raquel's mood swings are food related. My girl, not being at all overweight for her age, absolutely LOVES to eat. I've been experimenting with giving her meals and snacks at different times throughout the day, and I've started to see a very familiar pattern. She definitely does not prefer to have a few big meals. She loves to graze throughout the day. And by using the word "graze", I'm not implying that she eats like a bird. Instead, she has an insatiable appetite - another possible side effect to the medication. It can either make you really hungry, or not hungry at all.

As far as snacks and meals went today, I gave them to her before I usually do. She was happy and content all morning until around 9am (very typical) when she wanted to leave and go do something. Once we came home from a few errands, she continued to be the happiest, most playful thing for the rest of the afternoon, even taking a 2 1/2 hour nap! Today I was able to do my workout with her in the room - something that NEVER happens. She hates when I do it - don't know if it's the loud Turbo music & sirens going off or her just knowing I'm going to be somewhat unavailable for awhile. But today she did great and was all smiles. At one point, when I asked her to get out of the way, she went up to the tv and acted like she was going to turn it off, and when I said, "No!", she cracked up. I've got to say that she was genuinely messing with me at that point, and I couldn't be happier about it.

Another change is that she is really turning into a "Daddy's Girl." The hubby has been putting in long hours and works the majority of the weekends so both girls (well, the 3 of us) are typically starved for his attention once he makes it home. Raquel now wants Dad to get her to sleep at night - not me - and when she wakes in the morning, runs to HIM instead of ME! What?!! So not liking that part but at the same time, the break is kind of nice and it gives me a chance to relax and have some alone time with Gabby.

I still haven't had the blood work done, but at this point, we see Dr. Mower in a week so figure I'll just do it then. Again, he didn't stress an urgency (and because I'll use any excuse to get out of anyone's blood work), and since I've been noticing her adjusting to the medications better (I think), I'm feeling a lot more optimistic these days than when I first called him voicing my concerns. But I am really looking forward to getting his input on Tuesday morning.

Appears To Be Adjusting To The Medication

2009-07-27T15:31:00.000-07:00

Raquel has been really great these past few days. It seems as though she is finally adjusting to the Depakote. Her balance is improving and she's not nearly as clumsy. And she continues to babble more and more. Today, I swear she was singing along to Bob Marley...

One thing I've been doing differently is giving her the morning dose a couple hours later than I was typically giving it to her. This allows her to have more food in her stomach - breakfast plus a snack - and she hasn't been "crashing" as much, or as severe. It's really important that she has more solid food in her tummy before taking the medicine.

I've also been reading up on the side effects of Depakote, the main ones being constipation, headaches, dizziness, nausea, and drowsiness. Good times. So I've been trying to be a bit more proactive during her difficult moments. Does she have a headache? Is she tired or does she just need to lay down for a few minutes and rest? She'll now tell me - eventually - if she has a headache by either saying "yes" when I ask the question or she says "headache!" when I ask what is wrong. Both of the girls have been eating tons of watermelon, which is a great way to keep fluids in check, especially during the heatwave(s) we've been having out here.

Yesterday, we had a really great time at the beach. We haven't taken Raquel for many, many months because of it being a flipping nightmare the last time we took her. But Gabby has been begging and pleading so we finally agreed, with the deal being we'd only go for a short while. The waves were pretty big so Gabby couldn't go out as far as she'd like, but besides that drama, we had a lot of fun. Raquel absolutely LOVED the ocean this time. We jumped her over waves, and during the break between sets, she'd sit on the sand and just splash and splash around until the tide came back up. She was not even the slightest bit afraid, even when the water would go back down and make you feel a little wobbly on your feet.

After playing for over an hour, Mike took her to the shower to get her rinsed off, and once I changed her into some clean clothes, she became really content and mellow and it was at that point that I wished we would have come prepared to stay longer. But there's always next time.

Looking forward to the start of a positive week!

Two Steps Forward, One Step Back

2009-07-21T17:25:00.000-07:00

That's how I've been feeling these days. Even though I definitely feel that the medication is having a positive effect on Raquel, things can still be very challenging to say the least.

One step back...

This morning, Raquel had a tantrum that caught me off guard because it brought back so many memories of how things used to be. I'm surprised at how easy it is to forget, but the flashbacks were loud and clear.

The day started out fine. She slept very well, had breakfast, and was just a happy little camper. We headed to the grocery store early to beat the heat, and she had a great time shopping with me, even playing with the balloons they were given by the checkout clerks. (SIDE NOTE: I hate those balloons! I'm convinced that the checkout people handing them out have no children of their own because who would wish that car ride home on anyone?). Anyway, on the way home, I rolled the windows down in the car so she could feel the wind in her face - she LOVES to feel her hair blowing, even with a loud blow dryer - and she was all smiles when we pulled up to the house.

I have to say that I have absolutely no idea what set her off. We came inside, I put on the television so she could watch Noggin while I carried in the groceries, like I always do, but I couldn't even make it to the door before she threw herself back and started hitting her head. I immediately thought she may be hungry, so grabbed some snacks and that made her even more upset. After about 30-minutes of being unable to calm her - and visualizing my groceries still sitting in the car - asked her if she wanted to go into the bath. She got up and ran to the bathroom door, and watched intently while I ran the water. But today, the water didn't work. She started to tantrum IN the bathtub, and I have to say that panic pretty much set in because I was very confident injury was just moments away. And getting a slippery 35+ pound girl having a tantrum out of a tub was a very hard thing to do.

Finally, I called for Gabby - who was playing in her room with a friend - to help me. I know it sounds sad that I had to call in a 7-year old for backup, but don't forget that Gabby witnessed over a year of in-home therapy, not to mention 6 months of the daily sessions, just like I did. She's wise beyond her age and I am fortunate that she doesn't get freaked out by it all and truly seems to understand the circumstance. Gabby layed down with Raquel on her bed, softly talking to her and rubbing her head, and Raquel slowly started to calm. I put on the music (music didn't work earlier either), and she began to calm even more and became much more manageable.

Gabby went back to playing with her friend, and I slowly began giving Raquel little snacks to see if she was ready to have lunch. Once she was fed and had some juice, she was almost back to her normal self again. But it took over 2 1/2 hours to get her there.

She was playing in her room when Mike came home for lunch, moments after she finally calmed down. He took one look at me, the house, groceries unpacked in the kitchen and asked what was going on. When I told him what happened - as he could hear Raquel laughing and playing in her room in the background - I knew he thought I was losing my mind. But Gabby backed my story. :-) Then he took the girls out for ice cream to give me a break.

Two steps forward...

Mike sent me this picture from Petco when they were out.

It may not seem like a big deal to you, but it reminded me of Coach, her Applied P.E. therapist. One of the biggest things I asked him to work on with Raquel was getting her comfortable walking outside of her own element. And look at her go! She cruised around the whole store - running into her Uncle Skip at one point - and just having a good ol' time. She also now walks up to the top of our cul-de-sac, which is a hill, then all the way back down. It's great exercise for her and helps strengthen her legs.

Overall, I'm noticing a lot more positive changes than negative ones. A lot of her behaviors at this point are age appropriate, but the lack of verbal communication continues to remain the hardest part. I will be resuming the PECS so she can at least tell me with pictures what she wants or needs, until she can be more vocal.

Staying Optimistic

2009-07-13T15:53:00.000-07:00

I am very happy to report that Raquel has gone back to her somewhat normal sleeping patterns. Besides staying up a bit later, she's sleeping pretty sound again and has stopped giving me - knock on wood - my 3:30am wake up call.

She's still just really out of sorts and I don't know what to make of it all - except hearing that mother tell me that things can go backwards at any given time. Maybe that is what happened this last week or so. We did not do the bloodwork last Friday because it was such a rough morning, so I'm planning on taking her this Friday instead.

Raquel is still very much about routine, but it seems as though her routine is constantly changing, if that can even make sense to anyone but me. She no longer enjoys going on walks - perhaps it's just the stroller she's not liking anymore - but she can't tell me what the problem is. Halfway up the street she starts freaking out and we have to come home. Gabby thinks the sun in her eyes is bothering her, which is definitely a possibility with her sensory issues, and she doesn't seem to mind being pushed around the mall, so that's where we go sometimes before the stores open for our morning walk.

She does seem to be talking more - especially in the morning when she wakes up. Some of it I understand, some I don't. She may have developed her own language of sorts. She gets really animated and her pitch changes as well as her facial expressions. I definitely feel she is talking to me and trying to communicate, and I just answer her back, acknowledging the words like I was taught to do.

There are two things that have never changed: Raquel's love for (1) music, and (2) water. Both are secret weapons that snap her out of her tantrums almost immediately and I am constantly rotating between the two. The water can be a bit tricky at times because if she's not ready to get out, it can get pretty ugly. And you definitely cannot say, "water", "bath", "pool", or "wa-wa" without following through. Music works great - especially when we are out and about. I have her favorite songs on my cell phone that can be easily played in elevators, grocery stores, parks, etc. and make trips back to the car much more pleasant.

Actually, there is a third secret weapon - the Moose & Zee characters on Noggin. If she is playing in her room and Gabby is watching tv, she'll yell, "Raquel! It's Moose!" and Raqi comes running down the hall to watch. (NOTE: I have been unsuccessful at locating a Moose stuffed animal or blanket. If anyone knows where I can find one, please let me know. They are not sold on Noggin, as far as I can tell.)

I'm still in the process of getting Raquel's therapy resumed. Her pediatrician refused to sign the form stating therapy was a necessity, so now it goes to her neurologist. I'm sure he won't have an issue signing the form, especially with LKS in the picture. I thought I should have started with him in the first place but was obeying the chain of command I was given. Again, more valuable time wasted. When will I start listening to my gut?

I also spoke recently with Bev, my education consultant. She continues to be such a wealth of information. I don't know what I'd do without her input and guidance. And she makes herself so available to me - days, weekends, evenings. Anyone with a special needs child should definitely have a Bev in their corner providing accurate information. When I asked about her thoughts of putting Raquel in a "typical" daycare setting instead of a school one, she made a really great point about how the school is supposed to be working on potty training and self-care issues, and to make sure a typical daycare would be focusing on that as well. Just more to think about in the next month or two.

Besides a rough morning, Raquel had a really great day (so far) and I'm optimistic that things will get back on track a bit this week.

Why Respite Care Is So Important

2009-07-09T17:27:00.000-07:00

Today, I was very fortunate to have Jennifer come and watch Raquel so I could briefly go to work, take Gabby to lunch, and then sit in on her summer literature class. I've said it before that one-on-one time with Gabby is very much a necessity right now, and today was another perfect example of that.

This morning wasn't the best. I mentioned yesterday that Raquel has been waking up earlier and earlier these days, and today was not an exception. We started our morning at 3:30am. I tried everything to get her back to sleep and finally said, "Screw it!" and made coffee. She had breakfast at 4:30am, watched a little television, and then Mike heard us shortly after 5:30am and asked what was going on. I told him that I was just about out of patience - AGAIN - and he said to go take a break while he dealt with her. About 20 minutes later, she was fast asleep. I guess she wanted her dad.

And then it was Groundhog's Day. She woke up around 8am, and we did the exact same routine: breakfast, a little tv, listened to music. I really didn't know what to make of it all but once I saw the enormous smile on Raquel's face when she saw Jennifer walk through the door, I had really high hopes for the day and looked forward to the alone time I was about to have with Gabby.

I really shouldn't have text messaged Jennifer at lunch to see how it was going but couldn't resist. I was hoping for a good report, but apparently Raquel was carrying on with her just like she has been with me and Jennifer wrote back: "Not a good day", which is really surprising because she's always very easy for Jenn to take care of, or at least to redirect. Today, it was hit or miss with her. Finally, she fell asleep and slept for about 1 1/2 hours.

Even though I knew Raquel was being difficult, I knew she was in good hands and was able to really enjoy my time with Gabby. She was an absolute doll the entire day, from being with me at work, to lunch, to watching her in class. I had so much fun seeing her have so much fun in a literature class!! There are only about 10 kids in it and everyone took turns reading out loud, doing skits about the stories they read, and playing a really cool tic-tac-toe game played with word endings. I'll definitely be doing that with her at home. What a great way to get them excited about creating words! And Gabby was so proud to have me in class. She kept looking towards me, giving me the thumbs up when she answered questions, and was just beaming the whole time.

So why is respite so important to me? Because when you are with a special child all the time, you need a break from it all. When you are with ANY child, you need a break from it all. But at least if you have a "typical" kid, they are much easier to hand over to others. Jennifer knows that Mike works 6 days a week and has limited time around here to help and that the responsibility of it all is pretty much on me and, sadly, Gabby. And she feels bad that she can't help more. I'm just thankful for the 4 hours a week I get and that she works to give other families 4+ hours a week so they can have their break. Most respite workers are highly qualified to deal with special needs children & adults, the elderly, and are certified in CPR, but make very little money in doing so. I think that is a really sad thing.

Today when I came home and saw my little curly locks - and knew at any given time she would, and did, start up - I had patience and was ready be a Mom again. And that is what really is important.

The Bookstore - Not Such A Great Idea

2009-07-08T12:31:00.000-07:00

Raquel has been a bit out of sorts these days. I am very curious as to what adjustments (if any) her neurologist will make with her medication once her bloodwork is complete. One of the things I've learned from the mother I've been communicating with is to be prepared for regression at any given time. She said that sometimes her son will have great days, weeks, or months, and then will slip and have a couple of bad days, weeks, or months. I guess it can be a day-to-day thing at times. And patience is a virtue, right?

I don't know how to describe her "moods" except to say she has these difficult phases throughout the day that can start up at any given time. She's getting mad a lot more, and when she's mad, she'll hit her head and kick her feet until I can break her from doing it. Sometimes that can take me 30 seconds, other times 30 minutes. She's still napping very well during the day - between 1 1/2 - 2 hours - but I've definitely noticed a change in her night-time sleep patterns. She's tossing and turning a lot more. When I check on her, I find her in different positions with the blanket usually kicked off, and she's waking up earlier and earlier in the morning, which I'm really not thrilled about.

One thing she absolutely hates - and will trigger the behaviors - is me following her around in places outside our home. Here, cabinets and doors are locked, she can play quietly in her room, and roam around the house as she pleases. That's not true elsewhere. I have to constantly stay on my guard with her, which really takes the fun out of going places for the most part. For instance, our outing to the local bookstore...

I had to make a very quick stop to pick up a book for Gabby's summer literature class. Since I knew exactly what I needed and thought the timing was good, I decided to take Raquel with us instead of waiting until Mike came home from work. Everything was fine at first - both girls were playing on the little stage and having fun - until Raquel spotted some really enticing sound books on the bottom shelf and started pushing the buttons to hear the noises. Since there were only a few people in the store, I didn't make an issue out of it. After all, a little girl is entitled to have some fun at the bookstore! But then she got up and bolted from me, taking out as many books as possible along the way. I ran after her, picking them up as quickly as possible, trying to neatly put them back while preventing her from doing more damage. When I was finally able to grab her, the lady working there quickly asked what I needed and immediately went and fetched the book for me. She then showed me where to check out. I'm thinking story time at the library is probably not in our near future.

I do realize that a lot of her behaviors are age appropriate, which is truly a good thing. But when you factor in her inability to effectively communicate or express herself, it can make a bad situation even worse. But I continue to learn and am getting better at reading her. And I'm noticing that certain times of the day are most behavior provoking: around 8:30am, 10:30am, & 3:30pm.

Next up is her bloodwork, which is happening on Friday morning. After that, I'll talk to her neurologist early next week and see what he recommends.

A Very Encouraged Neurologist

2009-06-30T17:21:00.000-07:00

I spoke with Dr. Mower, Raquel's neurologist, a little while ago regarding my concerns about her clumbsy walking and the bruising. He said that Depakote is known to affect both of those areas and put in the order for blood work (sigh) to test her platelet levels. Even though she is on a pretty low dose, it may need to be lowered a bit more. The blood test needs to be done before I give her the morning Depakote dose, which is usually between 8:30am - 9:00am.

When he asked me if I've noticed any changes in her and I said yes, he immediately wanted to know more. When I described the changes is in her sleep patterns - particularly at night - he was very excited and said that showed the medication is definitely doing its job and altering the abnormal brain discharges. I also told him about how she doesn't hit herself in the head, unless very tired or distressed, that she no longer is constantly moving, and that her teachers reported she is able to stay focused in activities for longer durations. He said those are behavior changes, and another really great thing. I believe the last comment he said to me was, "This is awesome!"

So, now I need to go to Children's Hospital and have the blood test done. He said there is no urgency in doing so, but, of course, the sooner the better. Once that is complete, I call his office the next day and review the results with him and go from there. It was nice to hear him sounding so encouraged. :-)

Not Wanting To Call The Neurologist

2009-06-29T15:24:00.000-07:00

This afternoon, Raquel fell asleep at naptime as I was holding her. I've gotten so used to giving her a kiss, telling her "night-night" and putting her in bed that I'd forgotten how wonderful it is to share that special closeness we had when she was a baby. Instead of carrying her right to bed, I just held her and watched her sleep. She looked so peaceful, I didn't want to move her. Of course, I eventually did.

I'm told by some that they don't know how I do what I do in regards to Raquel. Sometimes I don't know either. She exhausts nearly all of my energy on a daily basis. And that can be really hard - especially considering I'm not just a mom to her, but also a very active and demanding 7-year old, not to mention being a wife first. I'm fortunate to have a husband who understands that if he comes home to me in sweats, my hair in a ponytail, with no makeup on, it's nothing directed at him. Either I (1) forgot and hadn't looked at myself all day or (2) just had one of those "Raquel" days.

Today when she slept, I couldn't help but think about what the future holds for us. I so desperately want to know what she is thinking and feeling. That is what eats me up inside - not knowing. I do know that she uses the majority of her words when I am present. She also saves her worst behavior for me (such as hitting me in the eye with a water bottle at close range), but can also be the most loving and affectionate little girl on the planet - when she chooses to do so.

Unfortunately, since increasing the Depakote doseage at night, I'm noticing that Raquel is becoming more and more unstable on her feet. She's very wobbly and is constantly walking into things and falling down. And, she's bruising easily. Not good. I know I need to call her neurologist but know that he'll want to do blood work and I don't want to go back to the "testing" stage. I promised her we were all done with tests for awhile, and realize now that I wanted to think that the most.

And guess who I heard from today? The school district. The program specialist returned my phone calls from about a month ago. I'm still amazed at how they portray themselves as having Raquel's best interests at heart. She told me that she spoke with Raquel's teacher and he thought everything was fine and didn't know why I'd be calling. Um, hello??? When I said that she wasn't getting the therapy she needed, she became very defensive - until I gave her some specifics. She asked if I was "told" this or "knew" this, and once I said that I "witnessed" it, and was thinking about getting an inter-district transfer, the tone drastically changed. But she said she was the only one there over the course of the summer (not true) and that we couldn't meet until after school starts back up in fall (again, not true). But, I don't really care and I didn't force the issues. I'm going to continue to push therapy in other options over the summer. Again, not convinced this school setting is the most appropriate for my girl. As it stands right now, she will resume school in mid-August in the ortho class she was in before.

I have also been communicating with a parent of a 7-year old boy diagnosed with LKS. We are in the very early stages of this, but it's really nice talking to someone sort of going through the same thing and able give me advice. I'll continue to seek out additional support groups.

Trying To Find A LKS Support Group

2009-06-24T13:54:00.000-07:00

I was pretty excited today to learn of a Landau-Kleffner Syndrome support group. Turns out, there are only 5 members. I know it's a rare disorder, but c'mon people! There's got to be something going on out there!! But at least it is a starting point.

But then it made me wonder. What if there's not? What if there are people going through the same thing as me without anywhere to turn for advice, reassurance, and most importantly - support and encouragement? It makes you kind of start to put things in perspective and realize why you may have been given a specific deck of cards in the first place. Is this the point where I need to step up to the plate and instead of searching for something, actually DO something that can help other people? And if so, how and in what capacity?

I do know that if I knew then what I know now, a lot of things would be different and I need to figure out a way to let parents know how to force the system to work. I've said it before that you have to push-push-push, and I don't mean lightly.

Unfortunately, my request for additional respite hours (I get 4 hours per week) was denied due to budget cuts. I was really looking forward to another 4 hours added - as I was told would happen earlier this year - but I guess need to be happy with what I have. My case worker today told me that hours have been reduced for many, which makes me very sad. Respite is key to keeping your sanity. At least for me. When you are dealing with a special needs child - and a very demanding one - you really do need a chance to remove yourself and recharge. They will re-evaluate again on her 4th birthday and hopefully I'll get an increase in hours then.

I was also given the contact info for another school district so we can do an inter-district transfer. Hopefully they will be more responsive than what I've been dealing with in ours. I've also spoken with my insurance company and found out that they cover both occupation and speech therapy if she's not getting her needs met through the district. Looks like she may be seeing Karin (her previous OT) in the very near future...

Learning Some Lessons

2009-06-23T15:24:00.000-07:00

On Father's Day, I realized the importance of being prepared when it comes to Raquel's allergies. Although she did have allergy testing done several months ago and was prescribed the EpiPen because digesting cashews could make her go into anaphylactic shock, I guess I've been pretty laid back about it. I've simply made sure that she stays away from nuts. That should work, right? Yes, if she's only allergic to the nuts. But the allergy test did not test for every single thing out there. Most environmental stuff was ruled out, as well as our beautiful Annie Dog, but Sunday was a different story.

She was a happy little girl all Sunday morning, and was playing and laughing the entire 45-minute drive to my in-law's house. In fact, the girls were carrying on so much that I suggested we play the silent game to see how long we could all go without making a sound. That game, unfortunately, never lasts very long in this family. Especially when you put Gabby into the picture. She really thinks she was given her name because she talks so much. :-)

As soon as we arrived at Mike's parent's, he immediately started giving her some snacks, one being smoked salmon, which she absolutely loved. But it was really close to her nap time and she started to get pretty fussy right away, so he gave her to me to get to sleep while he left with his dad and Gabby to go visit neighbors. Right when they were leaving, I asked Mike if she hit her lip because the corner of it appeared to be swollen. He said no, that she was fine, and off they went. Then a few minutes later, I asked my mother-in-law if her mouth looked swollen. She said no, but I was still really concerned. And then it happened: her face started to swell - mostly her mouth and cheeks - her eyes got all red, and then some hives appeared. When she asked me if I had her EpiPen - and I didn't - I also realized I didn't have any Benadryl on me either. Really not a good thing at all.

I didn't particularly freak out because this appeared much different than the cashew incident, but once I noticed the hives developing on her arms, I headed to the closest drug store for some Benadryl, and she immediately started looking better once I gave it to her. Unfortunately, she remained very irritable for the rest of the day and was just really out of sorts. So... I've stopped taking the allergy thing lightly and now carry the Epi-Pen wherever I go - along with some Benadryl. Just the thought of possibly ending up in ER last Sunday is horrifying.

I've also learned the importance of having some one-on-one time with Gabby. She and I have been constantly butting heads lately and I've been thinking it was just her being 7. That's probably part of it, but today Mike came home at lunch to watch Raquel so Gabby and I could go to Toys-R-Us. She was a completely different child. She wanted to hold my hand and stayed close by my side throughout the store. It was really nice. I didn't realize how starved for my undivided attention she was until today. We will definitely be resuming our "date night" very soon.

And finally, today I realized why I had more "boy" friends than "girl" friends growing up: Girls are mean to each other and I can't believe how early it starts! The groups, the "clicks", the "You're wearing THAT?" stuff is truly unbelievable. To see how these neighborhood girls are to each other and how they treat Gabby is really a bummer. I'm always calling the parents and sound like a broken record saying, "If they can't be kind to each other then they shouldn't play." I think it's going to be a long summer!

And Just A Couple More...

2009-06-19T12:00:00.001-07:00

Today, Jennifer had fun playing dress up with Raquel. She has finally learned the trick to keeping things in her hair: ignore them. As soon as you say, "Look how cute!" or make any kind of acknowledgment, Raquel will immediately take them out. Gabby took these pictures earlier, and I just had to add them.

Happy Friday!

Had To Add Some Pictures

2009-06-17T13:33:00.000-07:00

This morning, I briefly stopped by work, and when my friend and helper, Terri, met us at the car, she immediately said, "Oh my gosh! Look at her hair!" as soon as she saw Raquel. I glanced at the back seat - still not able to completely shake that final 24-hour EEG image - and thought she had done something unknown to me during our short ride to work. What Terri was referring to was how much her hair has grown out and how big she is getting.

Earlier this morning, I had that same realization: I was getting her dressed, grabbed a pair of hot pink stretch pants, and was puzzled watching her walk around the living room shortly after. The pants just seemed loose on her for some reason. A few minutes later, I looked at the tag and discovered that I had put Gabby's hot pink stretch pants (hey, every girl's gotta have a pair or two, right?) mistakenly in Raquel's drawer and she was wearing them instead! And they pretty much fit! Gabby is only about a head taller than her now. She really has grown a lot.

So, I thought it was time for me to put some new pictures on her blog. This is how most of you probably still picture her looking. These were taken by Cari during her final ABA session on her third birthday in mid-January:

And these were taken last night before bedtime in front of our friend's house.

She's definitely got some curls going - and LOVES to have her hair brushed. I'm sure her Samoan cousins are proud. :-)

It's Officially Summer Break

2009-06-16T14:36:00.000-07:00

Today was Raquel's last day of school. Tomorrow, technically the last day, is a minimum day so she would only be there for a little over an hour. And since the past two days weren't the best, we felt today should be it. It was hard saying good-bye to her teacher Jeff and Nurse Janice. I thanked them for everything they've done for Raquel, and for the encouragement they have given me. I still hear them saying, "Bye, Raqi!" and not knowing whether or not she'll be back with them again next year. They always told me that she was the highlight of their day.

As I drove away, a really sick and alone feeling hit me - kind of like what happened when her in-home therapy ended. I got so used to having everyone in the house on a daily basis, and once that was gone, it was just me dealing with Raquel's needs the best I could. And sometimes alone can be a really scary place.

So on to the summer months ahead and what I need to accomplish during this time off:

Getting Raquel re-evaluated by another school district to see where the more appropriate classes for her are located.
Getting speech and occupational therapy started ASAP - whether in-home or in another setting.
Researching LKS in depth. This is such a rare disorder - with only 160 cases being reported from 1957 - 1990. More posts on this to come...
Finding a way to educate families going through the same thing - to give them encouragement and tell them not to give up and to make sure they give their child a voice. Somehow, I need to do this in order to make Raquel's voice heard loud and clear. People need to understand that they can make the system work with a lot of effort.
Oh, yeah! And go to the beach, the mall, do picnics, play ball - and have some much needed down time!!! :-)

Happy Summer Break, everyone!

Last Week of School

2009-06-15T13:08:00.001-07:00

Wednesday is Raquel's last day of school until the end of August. Since I chose not to enroll her in summer school due to high class sizes, I'll be trying to find fun activities to keep her busy. She definitely likes to get up and go in the morning.

I continue to fight with the district, so this summer I will have her assessed by another school district - and start the whole process all over again. As much as I hate to move her away from her current teachers, we all know that this isn't the right class for Raquel. Yes, she's getting one-on-one attention for the most part, but therapy is non-existent, and her being surrounded by silent kids is not helping her communication skills. Regardless, it will be a sad day on Wednesday when we say good-bye. Teachers that deal with special needs kids are truly special themselves. It can be so hard with Raquel sometimes, and I always think of her teachers wanting to put themselves in the position to help her and the others and make a difference in their lives. I don't think special ed teachers get the credit they deserve. Their big hearts are not taken for granted - at least not in this house.

Over the last couple of weeks, I've learned about more and more options being available to me. I've also learned that just because certain individuals are associated with a district doesn't mean they necessarily agree to district politics. And yes, I did say politics. When I voiced my concern about the district failing to return my phone calls, I was told that was considered "breaking down the parents," meaning that if you are rejected over and over again, you eventually get sick of trying. But the main thing I've learned is that I have to be Raquel's biggest advocate and push, push, push - for everything. No information is volunteered, but if you educate yourself and ask the right questions, more and more resources suddenly become available. And I'm happily given the information - I just have to inquire first...

Another Neurological Follow-Up

2009-06-03T14:10:00.000-07:00

Raquel's next follow-up appointment with Dr. Mower is scheduled for August 4th at 9:30am. He will basically be observing her and getting our feedback on how she's reacting to the Depakote. In November, he wants to do another 24-hour EEG, so my little Smurf will be returning in another 5 months. The purpose of this EEG is to determine whether or not the brain discharges have changed or subsided. At least I know what to expect this time, and hopefully won't drop the device as soon as I walk in the door.

Raqi had another great day. I'm beginning to think that she's turning into a new child on me, but again, don't want to get too excited because everything is subject to change at any given time. She continues to be happy and content as the days go on, and is very playful - especially with Gabby. She wakes up very rested, and is talking more. Her tantrums or meltdowns are seldom, and completely different in intensity. When I told Dr. Mower's assistant all this, she said she'd make sure he received this information, and that he would be very pleased.

Her teachers are also noticing changes in her during school. She is engaging in activities for longer durations, and overall appears much calmer. But she doesn't seem sedated, which was one of my biggest concerns. I didn't want a lethargic 3-year old laying around the house, but she is still very active - just not constantly moving.

Let's see what tomorrow brings...

So Far, So Good

2009-06-02T14:45:00.000-07:00

I am very happy to report that Raquel is 2 for 2 with school this week - after being out for nearly two weeks! I know that tomorrow is definitely a new day, but her temperament seems to be a bit different these days. I don't think I've ever seen her so happy. Again, trying not to get ahead of myself with the Depakote, but part of me really thinks that she is finally able to get some rest now that she's on it. Naps are still lasting around 2 - 2 1/2 hours, and she appears to be sleeping very solid through the night. The only thing different is that she wakes up really hungry in the morning - more so than usual - so I have been feeding her as soon as she wakes up.

After doing some research on her summer school program - which is only for the month of July - I have decided not to enroll her in it. I don't feel that it is a safe place for her due to the high class volume and low teacher ratios. I really wanted to keep her in a consistent routine, however, this class isn't the right place for her. So now I've got to find some fun things to do over the course of the summer.

The main concern right now is her therapy. I am beyond unhappy with how it has been handled by the district. For starters, in the IEP from January, it states that she will have two 30-minute sessions of speech therapy per week. I think she's seen the speech therapist a handful of times - all of which there wasn't even a session because they "don't get along", whatever that means. So, she basically has not had speech therapy since she started school - and speech therapy is a critical component for treating LKS. The IEP also states that she will have 30-minutes of occupational therapy each week. Not happening. In fact, Leigh, her OT, has only seen her ONCE. Completely not acceptable. And it's also not acceptable that my calls don't get returned. One day, I promise you, they will realize that I won't go away. I am very fortunate to have my educational consultant on my side, giving me great advice and feedback. She is constantly trying to keep me grounded and gets a lot of my venting. But because of her, I am able to keep my composure when dealing with the district. Thank you, Beverly. You really are a wealth of information and I appreciate having you.

I am told that in-home therapy (covered by the state) is pretty much non-existent once you transition to the school district system. But my take is that if the district isn't doing their part, and she's not getting what is recommended - and documented in writing and signed by everyone who made the recommendations - then I have no choice but to pursue other options. And I'm learning that more and more options are available to me than what is presented. I just have to continue being Raqi's biggest advocate, holding my ground - and not going away.

Finally Feeling Better

2009-05-27T11:16:00.000-07:00

I've got to say that I have never had such a sick household. What was thought to be bacterial infections for me, Mike & Raquel, turned out to be viral, just like Gabby's, so the antibiotics did nothing. Friday afternoon and Saturday, I was completely bedridden, and very fortunate that Raquel wanted to do nothing but sleep, because there was no way I was slightly capable of taking care of her. Thank you, Mom & Dad, for making enough soup to feed all of us for several days and bringing it down with all the other goodies you packed. We really appreciate it - and the last place I wanted to be was in the kitchen.

Raquel has to stay out of school again this week because of her lingering cough. The inhaler does seem to really help, but because she's in the special education class where they have weakend immune systems, she can't expose them to her illness. And the last thing I'd want is for any of those adorable kids to catch what she had. Nurse Janice called to check on her last Friday, concerned that she was having a reaction to the Depakote. She was very surprised when I told her she'd developed pneumonia.

Speaking of Depakote, I had to lower the dose while she was on the course of antibiotics because she was becoming way too lethargic and it was getting really hard to distinguish whether or not it was illness related or medicine related. I did notice that her night-time sleeping changed a bit once I stopped giving her the nightly dose. She seemed very unsettled in her sleep. I'll continue to document the changes I'm noticing as she gets back on track.

I also received the book I ordered on LKS. Since the condition is so rare, information on it is pretty limited. This book - called The Official Parent's Sourcebook On Landau-Kleffner Syndrome by James N. Parker, M.D. - is basically just a reference manual for self-directed research. It provides web listings and directories that do not come up during regular internet searches. Looks like I've got a lot of reading and searching and learning to do.

One of my concerns so far is her speech therapy. If she does in fact have LKS, the main thing that is stressed is the importance of productive speech therapy. This obviously is not happening at school, where she wants absolutely nothing to do with her therapist. So, I'm beginning to wonder about resuming in-home sessions. Guess I need to call Regional and see how I would go about doing so.

Besides all that, I'm very happy that things are getting somewhat back to normal around here - and love seeing all the smiles and bright faces on my girls.

At Least The Pediatrician Is Close By

2009-05-21T20:17:00.000-07:00

This morning, Raquel woke up very happy and looking much better. But as the morning progressed, she became very congested and was coughing a lot - to the point where she was choking. When I was unable to feed her lunch without gagging, I called the nurse at the pediatrician's office to see if she recommended a decongestant of some kind. She could not because Raquel is under the age of 4. What she did recommend was bringing her right in to have her oxygen count checked again. So, I grabbed her shoes and off we went - fortunate to get the last appointment before the office closed for lunch.

Raquel wasn't very cooperative with the blood oxygen test. It seems simple enough compared to other tests she's had done. They just attach a little device to her finger and after about 45-seconds have the results. If she's cooperating, that is. Today, the doctor tried both hands, both feet, and her earlobes to no avail. I finally had to turn on my cell phone and play her music, while pinning her down with the other arm so she couldn't move. We finally got a reading of 95, just one point higher than the test taken on Tuesday. So, the doctor wanted to give her an oxygen treatment and then do the test again.

What good times that was. They placed her in my lap and I had to literally put this oxygen mask over her mouth and nose for SEVEN minutes, while she kicked and screamed and scratched. It seemed like an eternity. Once that was done - and she was beyond upset - we had to wait another ten minutes for the oxygen to get working in her system. She was too upset to participate in another oxygen test, but the doctor heard a loosening in her lungs and phoned in a prescription for an inhaler so I could pick one up on the way home. She was too upset for me to stop and the reality is I don't know how the doctor thinks I'd be able to give her one - have her inhale, hold for 10 seconds, then exhale? Not. I have to pin her down just to do nose drops!

The oxygen treatment did seem to help. She was breathing much better this afternoon. Tomorrow morning I take her back to the pediatrician - my 4th day in a row of being there - so she can make sure her lungs are healing the way she had planned, and give her another oxygen test. Wish me luck...

Let's Throw In Some Viral Tracheitis, Shall We?

2009-05-20T18:42:00.000-07:00

Gabby's cough from yesterday seemed worse today, so thinking she was ready to start her own course of pneumonia, I decided to take her to the doctor. Turns out that her lungs were clear and she showed no cold symptoms besides her cough. The doctor said that she appeared to have viral tracheitis - or an inflammation in her windpipes. He didn't put her on antibiotics, but said that since Raquel's pneumonia could have started from the same thing, he wants Gabby to lay low for several days, drink plenty of fluids, and REST. That didn't go over too well with her - especially the no playing with friends and drinking mostly water.

Raquel is doing pretty well. I still have fever "issues" and went out and bought a new digital temple thermometer this afternoon, which is currently my new best friend. Fortunately her fever hasn't gone past 101 today, so that's a really good thing - even though I've been giving her Tylenol every 4-5 hours and think she should be completely normal temperature wise and have major anxiety when she becomes lethargic and wants to sleep. I have to keep reminding myself that that is her way of healing, as hard as it is to watch.

Let's see what tomorrow brings. Hopefully the family will be feeling much better and that I continue to feel like a million bucks!

Not Expecting This One

2009-05-19T11:50:00.000-07:00

Just when I thought the week is off to a great start ... another curve ball got thrown our way.

Raquel woke up last night at 11pm with a high fever. I don't do fevers very well at all. I understand it's our body's way to fight infection and stuff, but they just really freak me out. I get out every thermometer I can find to make sure I have an accurate reading, and pretty much make a bad situation worse. I even woke up Mike - who spent the majority of last night at Urgent Care due to a lung/sinus infection - to make sure she didn't feel overly "warm." I'm beyond paranoid for some reason. I gave her Tylenol and tried to get her comfortable, but she was pretty miserable until 3am, when she finally went back to sleep. This morning she wasn't any better, so off to the doctor we went.

I really expected the pediatrician to say that her sinus infection had returned and that we would need to start up the antibiotics again. But that's not what happened. Instead, I was told that she has the start of pneumonia!! Both of her lungs were infected, and they had to give her an oxygen test to see if she needed to be hospitalized. Fortunately, she scored a 94 (under 90 = hospital) and was given a 5-day dose of medicine to help fight the infection. I take her back on Friday morning so the pediatrician can hopefully hear clear lungs and she won't require any additional treatment.

As I was driving to the pharmacy, I realized the importance of having a sense of humor during times like this. Yes, I wanted to cry - how much more does my little angel really need to go through? - but, again, it could be much worse. Fortunately the pneumonia was caught at the early stage and can be treated at home. And fortunately, she continues to be a real trooper throughout it all. She is a constant reminder of how resilient children can be.

Get well, Raqi. We love you!

Noticing Subtle Changes

2009-05-18T12:49:00.000-07:00

I'm trying not to get ahead of myself with Raquel being on medication, but I've got to say that I am noticing little things that I would really like to believe are directly related to the Depakote.

For starters - her naps. These have coincidentally gone from roughly 45-minutes per day to 2 - 2 1/2 hours. And she sleeps hard. I used to make background noise because she'd wake up if the phone rang, the trash pick up came, or because Gabby was playing loudly in her room. Not anymore. When she goes to sleep, she's down for the count. Instead of tippy toeing around the house, I've been able to go about doing things as usual.

Because of this, I am assuming that she is also sleeping heavier at night, especially since she is given a dose right at bedtime. This morning, she woke up at 3am because she needed to be changed. Anxiety set in because once awake, regardless of the reason, 3am means she's up, I'm making coffee, and doing my best to keep her quiet so everyone else can sleep. But this morning seemed a little different to me and once I changed her, I put her back in bed, rubbed her head a few times, and back to sleep she went. I was shocked.

The other thing I'm noticing is a change in her meltdowns. They are shorter in duration, more manageable and she is easily redirected. Yesterday I ventured out to the grocery store during a very difficult time - right before nap. As soon as we approached the entrance, she started in and I headed back to the car not wanting to deal with it. But then I changed my mind - I only needed a couple things and knew that I wouldn't feel like going back once she woke up hours later. So I told her to stop it, that we would go really fast and be home soon. And she stopped. Her teachers commented on this today when I picked her up. She had one incident but they said she snapped out if it after just a few short minutes and didn't escalate. That is wonderful news. The school week is off to a great start.

I know we are at the very early stages of all this, but am really thankful that she hasn't experienced any adverse reactions so far. I'll continue to keep my fingers crossed and pray for a positive week.

Nice End To A Long Week

2009-05-15T13:52:00.000-07:00

Last weekend, my in-laws were very gracious in offering to watch both the girls so Mike and I could enjoy a weekend in Las Vegas. All of us knew from the beginning that this was going to be really hard on Raquel being away from not only her parents but also the comfort of her own home, and we did our best to make it as easy for her as possible. Mike's parents spent most of the week baby proofing their house, buying new toys to keep things interesting, and stocking up on her favorite foods. I brought her boombox so she'd be able to play her music, and felt pretty confident that Gabby would be able to distract her if and when needed.

Unfortunately, it didn't turn out as well as we had hoped. She didn't want to nap, which meant she didn't want to sleep at night. She had meltdown after meltdown and by the time we picked them up on Sunday afternoon, everyone was exhausted, and his parents kept commenting on how much work she is. Thanks Mom & Dad for doing this for us. We know how hard it was on you and really appreciate it.

I kept Raquel home from school on Monday to try to get her settled back in a daily routine. She was very happy and content, and seemed to really enjoy being home and having things back to normal.

Then Tuesday came. I took her to school and it started out just like a typical morning ... until Nurse Janice called me at 10am to ask me to come get her. I was really surprised because even when Raquel has had meltdowns in class before, the room is equipped with all kinds of stuff - the ballpit, padded barrel things, etc. - which allow them to easily deal with it. Nothing they were doing seemed to work so she was forced to call me. We were asked to pick her up early on Wednesday to help try to wean her back into a school setting, letting her go a little longer each day until she was able to tolerate the entire class period. That sounded good at the time.

But Thursday was much worse. The meltdown started as soon as she got to class and I received the dreaded "come get her" phone call at only 9:30am, right after I got off the phone with the drug store pharmacist who informed me that her medication was ready to be picked up.

After speaking with Janice - as well as getting a lot of feedback from Raquel's ABA Team regarding Depakote and other kids they know of who are on it - I stopped at the store on the way home from school to pick it up, and immediately gave her a dose once we walked through the door. Then I basically just watched her for any adverse reactions.

I have to say that it did seem to slightly calm her. She took a 2-hour nap and slept really good last night. She's been in a great mood and today was able to stay the entire time at class. This weekend we should really be able to see how its affecting her.

I am still struggling with giving her traditional medicine and worry about the possible side effects. But then I think about what if this works, that maybe this is going to bring my girl out of her shell and how wonderful it will be to have her functionally communicate. When I look at it that way, what kind of mom would I be to not even try what a neurological specialist was recommending? It's frustrating because after everything we've experienced over this last year - all the tests, the appointments, the therapy, the sleepless nights - it comes down to giving her a pill twice a day. Again, if I knew then what I know now...

So glad we made it to Friday and that she seems to be settling down a bit. Looking forward to the weekend and am very hopeful that I'll be noticing positive changes in her over the next few days and weeks.

Follow-Up With The Neurologist

2009-05-06T14:25:00.000-07:00

This morning we had our follow-up with Dr. Mower, Raquel's neurologist, to go over all the tests and blood screenings she has taken. As I mentioned previously, the MRI showed no brain abnormalities whatsoever, and it turns out that all of her chromosome blood work came back completely fine as well. I was a little surprised by that because of my history of miscarriages, plus losing a preganancy at 5 1/2 months due to Trisomy 18. I kind of thought things were leaning towards that direction.

Not the case. Turns out that my 24-hour Smurf provided some big results in the EEG department instead. Dr. Mower said that the EEG showed a lot of abnormal brain discharges, especially at night. He then got out his chart and showed us how a typical EEG reading looks, then showed us how Raquel's was different. He said that it appeared that she was having some type of epileptic seizure - reminding us that there are many types and ranges and when you hear the word "seizure", you immediately think of eyes rolling back and uncontrollable jerking of body parts, which is obviously not the case with Raquel. He said that her EEG is consistent with a very rare syndrome called epileptic aphasia, also known as Landau-Kleffner Syndrome, or LKS. Again, Raquel continues to be a difficult piece of work because apparently in most LKS cases (I think), the speech delay is also accompanied by not understanding words, which, again, is not the case with Raquel.

The neurologist is recommending that we put her on a seizure medication for 3-months, and then do another EEG to see if it provides different results. His theory is that these abnormal discharges her brain is setting off is interfering with her speech progression, and that her lack of communicating is a huge frustration factor with her. Once she's able to effectively communicate, growth continues. But that's my take on it. All of this brain stuff is extremely confusing and today is the first day I've even googled epileptic aphasia or LKS.

As many of you may know, I am a huge advocate of holistic medicines and chiropractics and putting her on medication is not something I am taking lightly. Her doctor addressed this rather well, simply stating that as her neurologist, he is required to recommend treatments that have been studied, used with placebo trials, etc., but has also heard of the positive results from the GFCF diets, B-Vitamins, supplements, etc. He really does have a great bedside manner and I like him a lot. His frustration was pretty clear when he apologized for not being able to give us the answers we so badly wanted to hear.

But, I'm looking at this as a positive. The MRI was normal, the blood work was normal, pretty much all severe diseases, illnesses, syndromes, etc. have been ruled out. And that's a really great thing. It's still hard not being able to "know" how or what or where or when something went wrong, but I refuse to beat myself up over it anymore. Some things are just out of your control, and I am fortunate to have such a beautiful, affectionate little girl - and a neurologist who continues to be very optimistic!

Neurology Follow-Up Scheduled

2009-04-28T14:29:00.000-07:00

I spoke to the neurology department today and found out that Raquel's follow-up appointment has been scheduled for Wednesday, May 6th at 8:30am. Not my first choice of days or times, since I've got a teacher conference with Gabby that morning as well. But it was either May 6th at 8:30am, or being pushed out to sometime in July. So the 6th it is. I'm really looking forward to getting all the tests and appointments behind us. I'm starting to crave a sense of normalcy around here and long to be just a "typical" family, if there is such a thing anymore.

On a school note, I recieved Raquel's first progress report yesterday. Back in January when the IEP was conducted, the district put together yearly goals for Raquel based on their lame assessments of her. Remember, the district is who painted such a bleak picture of Raquel, which I completely 100% disagreed with. I never should have signed the IEP but I didn't know I wasn't required to sign it then. I feel like I should write a book or hold a seminar for parents approaching the transition period. If I knew then what I know now...

Anyway, Raquel was given 14 goals to achieve over the course of her first year in preschool - four for speech, three for applied physical education, one for occupational therapy, and it looks like six for general education. After being settled in her morning class for less than one month, Raquel has already met 7 of the 14 goals! The remaining 7 goals consist of speech - she's not particularly "bonding" with her new speech therapist but after working with Mary every week for a year, I'd be hesitant, too - as well as the applied physical education goals. She is finally starting to be a little more cooperative with Coach and I think that once she starts developing a rapport with him, she'll be a good little student - eventually. It was noted on one of the APE goals that although she wasn't throwing the items IN to the ball pool, she really enjoyed throwing them OUT of it. She's beyond stubborn.

I guess now that specific goals have been met, they just start increasing them a bit more. I need to contact my education consultant and get her input. She wanted to start the classroom observations once all of Raquel's tests were complete.

Not Liking The EEG This Morning

2009-04-23T15:11:00.000-07:00

I have to say that Raquel did amazing with her EEG. She walked around in that backpack without any issues and got more and more comfortable with it as the day progressed. This morning pretty much was her breaking point. She wanted no part of it and it was really difficult distracting her.

I left for Children's Hospital around 10:30am - to give me plenty of time to park and find a shuttle. Raquel was pretty irritable the whole way down, tugging at the gauze and just not being a happy camper. When I opened the back door to get her out of the car, I was shocked at how much damage she was able to do in such a short amount of time. I don't know how to even begin to describe it - except that she certainly didn't look like a Smurf anymore. Gauze was torn, the princess cap was nowhere to be found, electrodes were exposed and loose in some places, and her hair was just sticking up all over the place. I did my very best to try to "fix" it, but the damage was pretty much already done. People were giving us double takes as we walked by them, and the shuttle driver said, "She didn't look like that yesterday!" then mumbled something in Spanish that I couldn't quite make out.

When we finally arrived at the EEG building, we had to wait, which really set her off. And as soon as the technician saw her, he immediately burst out laughing and asked me what happened. I had to hold her down so they could take everything off and get her hair cleaned up, and boy did she put up a fight. She wanted out of there. She kicked and screamed from the EEG room, to the shuttle ride, to the parking structure, managing to lose a brand new shoe somewhere along the way. As soon as I got her in the car she started to calm down, realizing we were going home. I never would have thought that removing the EEG would be more challenging than putting the thing on!

I am so glad this is behind us and am assuming that this is the last test she'll be having for awhile. At least that is what I promised her today.

Dealing With The EEG

2009-04-22T17:24:00.001-07:00

Earlier today, I took Raquel to Children's Hospital to have the EEG put on. I've got to say that Raquel is such a trooper. She didn't even make a fuss and the technicians/nurses raved about how cooperative she was throughout the procedure. It probably took about 30 minutes to get it completely set up.

Here's Gabby being the best big sister ever and feeding Raquel some yogurt - with Kermit the Frog watching, of course. At Children's, it's definitely all about the kids.

We were the only ones in the waiting room and they took us in just as soon as we arrived. Raquel was wrapped tightly in a sheet to prevent her from moving, then the electrodes got placed all over her head.

Once that was done, her head was wrapped in gauze, then covered by a princess hat, then covered by a gauze helmet. I was concerned that Raqi would be able to take them right off, but no such thing. She has to get through 3 layers before she could even start messing with the electrodes.

She was given a backpack to wear that carries the device that monitors the electrode activity. I have to record things that happen with Raquel (ie. when she eats, sleeps, tantrums, etc.) in a log sheet, which I turn in tomorrow. The first entry is: "Time = 13:20. Mom dropped device by accident - HARD." Not really how I wanted to start it out but it is what it is...

I am amazed at how she is leaving her head alone. And the weighted backpack brings back a lot of Karin/Occupational Therapy memories when we were trying to find something like this to help her sensory issues.

But, if she was blue, she'd definitely look like a Smurf...

And Mike didn't know what to say when he first saw her...

The hardest thing so far - besides her not being able to have her beloved bath tonight - is having to watch her sleep to make sure she doesn't get the cord wrapped around her, which basically means no sleep for me. I'm just thankful this is nearly over and probably the last test she'll be needing for awhile.

On a school note, she's now throwing for the Coach, being very non-compliant with the speech therapist (she had to be removed from therapy because they were "not getting along"), and continues to make progress in class, which is a wonderful thing. I'm even seriously contemplating putting her on the bus.

Glad this is almost behind us. The EEG results take about two weeks, then it's back to the neurologist for a follow up.

Allergy Follow-Up Complete

2009-04-17T06:37:00.001-07:00

Raquel had her follow-up appointment with Dr. Welch yesterday morning. It was pretty uneventful. He received a copy of her MRI results and said that because it showed that there was just "thickened" sinus membranes and not "infected" ones, that it proved to him that she did have an hidden sinus infection and that the 20-day antibiotic took care of it. He said that by saying "thickened" meant that an infection was previously present. He recommended that I give Raquel a nose spray once per day to prevent a hidden infection from returning.

Then he apologized for not having any answers for me. He said it was frustrating for him as a doctor not to have any, and that he couldn't imagine being a mother and not able to get any. I thought that was very nice of him to acknowledge. And I'm bummed that I don't get to see him anymore. He said there was no need for a follow-up, that treatment can be handled through Raquel's regular pediatrician at this point. I guess that's a good thing. But once you start dealing with specialists, it's kind of like you are on a different level. They value your time and expect you to value theirs - so waiting in lobbies and medical rooms does not exist.

So what's next? The 24-hour EEG next Wednesday. I still don't know how they think she's going to be able to keep that thing on for 24-hours (I guess it goes into some kind of head "backpack"), but we'll just make the best of it. Her neurologist said that they would observe whatever data they could and wasn't too concerned about it not being the full 24-hours. Once that is done, we meet with the neurologist two weeks later and go from there.

Right now, glad to make it to Friday and looking forward to the weekend. Raquel is back to school on Monday.

MRI Results In

2009-04-03T13:05:00.000-07:00

I spoke with Dr. Mower, Raquel's neurologist, this afternoon regarding her MRI. He said that the test showed no abnormalities in her brain, that everything looked fine. What wonderful news! He did say that it was noted that she has thick sinus membranes, especially in the Maxillary area. There are 4 large sinuses - two inside the cheekbones (Maxillary) and 2 above the eyes (Frontal). When I told him that Raquel's allergist thought she had a hidden sinus infection, Dr. Mower said that the MRI results would agree with that and that she may need to go on a long-term nasal decongestant.

Next in the neurology department is the 24-hour EEG, which is scheduled at Children's Hospital on the 22nd of this month. Once that is complete, we meet with Dr. Mower two weeks later to review everything. He'll have the blood work results by then as well.

Raquel meets with Dr. Welch, her allergist, on April 16th for a follow up. It will be interesting to hear what direction he would like to go in, especially considering that she was just ending a 20-day dose of antibiotics when she had the MRI. For the MRI to show there was still something going on after being on the antibiotics that long, must mean she's got quite the infection in there. Poor baby. No wonder she's been so miserable!

In the meantime, I am welcoming Spring Break and looking forward to having fun with my girls!

MRI Complete

2009-03-25T12:35:00.000-07:00

What a long morning! It started out with waking up to a very sick Gabby. She had a fever and apparently the start of the flu. Since she obviously was in no condition to leave the house, Mike stayed home with her and I left for the hospital at 5:20am. Mike wanted me to cancel the appointment, but it has taken me so long to finally get to this point, I really didn't have the energy to start over. Even though I certainly didn't want to deal with this alone, I knew it was the right thing to do.

Raquel didn't particularly care for being woken up so early and then put in the car, but she really did great! I was surprised at how many families were already there when I arrived, since I had the first appointment, but that was just for checking in and paperwork. Besides having to wait for maybe 20 minutes, the rest of it went very fast.

The MRI department is shared with an adjoining hospital, so once it was Raquel's turn, we were escorted to the MRI area, which was a ten minute walk from where we were playing in the waiting area of Children's Hospital.

They had a bunch of cool toys in there and at one point, when Raquel spotted her snacks in the backpack and got mad because she couldn't have any, I put on her music. Not only did that distract her, it also brought other parents in there to dance with their kids! Although Raquel's situation was much different than the other kids, there was this common bond between the parents. The hugs and well wishes I received from complete strangers was very sincere.

Once we reached the MRI department, we were immediately taken to the anesthesiologist, who could not have been any nicer. I told him that I had reservations about putting her to sleep, and he thoroughly explained the process, and told me all about them using the highest technology imaginable. He also reminded me that they do MRI's all day long and even on newborn babies. He did make me feel a little better.

After our little chat, I layed her down on the table and he put a strawberry scented mask over her face, which she hated, but he already prepared me for that. She slowly started to stop fighting it and he turned her head so I could kiss her cheek one last time. Then he asked me leave so they could start the IV. No pictures - it went really fast and I was in tears. :-(

But after only 35 minutes, he wheeled her out and we were doing the same ten minute walk back to recovery at Children's.

And after another 30 minutes, I was able to see her and help wake her up. She smiled when she first saw me.

After some apple juice and a little popsicle, the smile was gone and she was beyond grumpy. I think she just wanted to leave. That, plus she wanted to consume something more than apple juice and a popsicle - she was starving! But because of the anesthesia, solid food was not recommended for several hours. Try explaining that to a starving 3-year old. She was not pleased.

She fought with the nurses and made it really difficult for them to take her vitals, which they needed to do in order to discharge her. They were somehow able to manage, and she carried on all the way to the car. Once I put her in the carseat, she was all smiles - she realized we were going home.

I'm so glad this is over with. Her neurologist should have the results back early next week and we'll go from there.

MRI Tomorrow

2009-03-24T13:36:00.000-07:00

Even though Raquel has been really sick, Children's Hospital is still planning on doing the MRI tomorrow morning. I called yesterday, pretty confident that they wouldn't want to sedate a sick child and that I'd have to reschedule. Not the case. As long as she doesn't develop a fever, vomiting or diarrhea, or any type of asthma condition, they can do the test. And, considering she is doing much better today compared to yesterday, I'm assuming she'll be feeling even better tomorrow morning.

Besides having a swollen and crusty nose, she fell on Sunday in our bedroom and has a cut on it. Then, this morning, she was playing in her room, lost her balance and fell into her dresser, splitting her bottom lip. Not good, but she's a real trooper and is handling it really well. I just don't like having to take her tomorrow looking so beat up. But at least she still has all those curls...

I also spoke with Bev, my Education Consultant, last night. She called to check in and see how things were going. When I told her she was in the orthopedic class, she was a bit concerned and wanted to know exactly what they do with her there. When I told her that she has applied physical education therapy once a week and speech therapy twice a week, she asked me where the occupational & behavior therapists were. I really have no idea, and I'm pretty sure that wasn't the answer Bev wanted to hear, especially considering my biggest concerns were sensory and behavior related. So, Bev will be observing Raquel in class before our IEP Review Meeting so she will be able to address whether or not this is an appropriate placement for Raquel. She is really curious as to what they are doing with her education wise outside of her therapy sessions.

In the meantime, just looking forward to getting through tomorrow. Please pray for a safe test for my girl!

Using Her Words At School

2009-03-13T14:53:00.000-07:00

Today, Raquel starting talking to her teachers in class. Of course, being my stubborn three year old, she decided to start out with the non-compliant words - the first one being her pointing her finger at Nurse Janice and yelling, "No way!" when asked to do something. That was then followed by the "don't want to", "you do it", etc. I'm just pleased that they are slowly getting to see her true personality, and they really enjoyed listening to her today. She did simmer down a bit at feeding time and would tell them "more", "eat", "come on", etc. I think by the end of next week, they'll be dealing with a little chatterbox.

I also met with Heather, my new Regional Center person. She is really nice and will be assigned to Raquel's file until age eight. She asked me a bunch of questions and put a few goals in place for Raquel for the year. These goals are:

Raquel to have her specialized care needs met by a trained respite provider in her parents' absence, through March 31, 2010. (This means that my respite care continues! I was so happy because I was previously told that once she started school, respite ends. Apparently not the case - it just keeps renewing yearly until we get to a point where I don't feel I need to leave her with a trained provider anymore.)
Raquel to be in the most appropriate educational setting with needed supports and services in place through March 31, 2010. (By now, pretty much everyone in the district is aware of my, let's say, "disappointment" with the transition. I still have Bev as my Educational Consultant who I can consider to be my liasion between them. She has the ability to randomly check on Raquel during class and observe therapy sessions. I can, too, except my visits are supposed to be scheduled in advance. I will be talking to Bev next week).
Raquel to further develop verbal communication skills to include consistent simple sentences by March 31, 2010. (This was added because I stressed my concern about her not talking at school, but, of course, she started doing so today.)

That's all to report for now. Just glad the week is over and that it ended with, as Nurse Janice said, Raquel having a "fabulous" day in class!

New Class Time Gets Better Results

2009-03-12T15:23:00.000-07:00

Last week, Raquel's teacher asked if I'd be open to trying her out in his morning orthopedic class instead of the afternoon one. The afternoon class has been pretty inconvenient for me, my work, and Gabby's school, but also has interfered with Raquel's napping (or lack of, since she was sleeping in class), so I was open to trying out the morning class.

Yesterday was her first day. Although I did receive a call to let me know she was carrying on, they said she was perfectly safe, wasn't distrupting anyone, and could stay until the class ended. They just wanted to let me know what was going on. I chose to go get her, and when I arrived, found her happy and content and enjoying a little snack. As soon as I got off the phone with the nurse, she was redirected by food (that's my girl!), and was able to get her composure back.

Today she had a great day! No episodes whatsoever and she was able to stay the whole time. They are very optimistic that the transition will be very easy - especially considering that today I brought them the secret weapon - the CD. At one point she appeared to get a little aggitated, but once they started the music, she immediately calmed down. And now that she's going to the morning class, there is no more sleeping during class, which is a really great thing. I pick her up, feed her lunch, walk, and then she's ready for her nap and is taking a much longer one, probably because she's tired from school.

Why the orthopedic class since Raquel isn't an ortho kid? Because the orthopedic class is less mobile, and they are able to give Raquel one-on-one attention and work with strengthening her legs and core. For those that don't know Raquel, she is constantly moving and to have her in a class with other kids on the go just meant she was another one that they were chasing around. In the morning class, there are only 3 students, so when they are having their ortho therapy, which doesn't apply to Raqi, instead they are able to put her on the tricycle, do leg exercises, etc. She still does circle time and meal time with them and gets that social interaction. Today when I picked her up, I saw her outside having a ball being pushed around in a wagon with her new "friends".

Raquel's allergist, Dr. Welch, also called today to check in on how she's doing. Since we've noticed big improvements since him putting her on the antibiotic, he feels that she truly had a hidden sinus infection since the 2007 fires and wants her to stay on the medication for a full 20 days. He also wants to see her again in another 4 weeks.

MRI Scheduled

2009-03-09T09:29:00.000-07:00

Raquel's MRI will be taking place on Wednesday, March 25th at 7:30am, at Children's Hospital. We need to check in at 6am and are the first appointment of the day. She can't have any solids after midnight, so I'm pleased that we have an early appointment since my girl wakes up wanting to eat! I'm told that the test itself will take approximately one hour. I can be with her until they put her to sleep, then will have to wait outside until it's complete. I'm not crazy about the putting to sleep part, but was told that they will give her a scented mask and it's pretty peaceful. They don't do IV's because they want the children as calm as possible for the test.

I also need to turn in a form to the anesthesiologist, stating that she's been seen by a physician within 30 days of the MRI. I'm hoping that Dr. Mower, Raquel's neurologist, will be able to take care of this since he is the referring physician. If not, I'll have to make an appointment with her primary pediatrician and have her complete it instead.

Allergy Appointment Complete

2009-03-05T19:30:00.000-08:00

Today we had Raquel's allergy testing done. What an interesting process it was. For starters, I am convinced that once you start dealing with specialists, you are automatically treated different. No more waiting in the lobby - they expect you to value their time, and don't waste yours either. Quite refreshing.

Here we are just waiting for a few minutes...

It started out with Dr. Welch asking us a bunch of questions and then giving Raquel an exam. She was very cooperative - especially considering this was all taking place during her nap time and she was obviously tired. Dr. Welch soon thought that Raquel has been dealing with what is called a "hidden" sinus infection. Once we told him about her developing croup, a sinus infection & ear infection after the October 2007 fires, he seemed to think that she wasn't given a strong enough antibiotic or that it wasn't given to her for a long enough duration. He said that hidden sinus infections are only detectable by x-ray or CAT scan, but that her symptoms definitely were showing that this was going on. He also said they are very painful, which explains why she is constantly pushing on her nose. I thought it was because she was itching it, but he said "pushing", which he observed today, is something different.

After his evaluation, he ordered up some tests that the nurse came in to administer. She even tried them out on all of us before doing it so we would know how it was feeling to Raquel - although she didn't push nearly as hard on us as she did Raqi. I don't know if I would call it a scratch like sensation, more of just a weird prick - kind of if you took a bristle hair brush to your arm and pushed down a bit hard. But, of course, there were not nearly that many bristles.

Here how the testers looked...

To apply them, Mike had to hold her in a big hug, and I had to first put those curly locks up in a high ponytail so the hair wouldn't mess with the test, and then hold her arms across Mike's shoulders so she couldn't fidget too much. She did really great when the nurse applied them. Her eyes got real big a couple of times but she never cried once. Then the real challenge came: we had to keep her hands away from the test areas for 15 minutes - and we were told that the stuff was going to start really itching. Mike did great - took her outside and did the best to distract her. One smear and we were done and would have to come back to have her re-tested at another time. Obviously, not what I wanted to hear or have to do.

This was taken right after the test was administered and bumps were just starting to form. Can't see much - but check out the chub. She's REALLY growing! :-)

Once her successful 15 minutes was up, the nurse came back in to check and measure her skin reactions.

And then she rubbed her back down with some anti-itching cream to soothe the areas.

Then Dr. Welch came in to go over the results. It's a great thing we had this done - turns out that Raquel has a SEVERE allergic reaction to not only cashews but also peanuts! She'll need to have an EpiPen (shot device) with her at all times to prevent her from going into sudden analphylactic shock if she digests them. So not good, but atleast we know. She also tested negative to not only environmental allergens, but also wheat and dairy, so she technically doesn't need to be on the gfcf diet anymore. He did say to gradually introduce the foods if we decide to take her off of it so we can see how they are affecting her. We see Dr. Welch again in another 4 weeks.

I'm just really happy that all the tests are done for now and that we are fortunate to have some answers. I'm still waiting for the MRI & EEG appointment dates, so until then, I'm hoping for some much needed calmness in the house.

School Success

2009-02-27T15:53:00.000-08:00

I'm very happy to report that Raquel did well at school this week! What a relief. It's been such a long process it seems. She will have PT (applied physical education) once a week, speech twice a week, and occupational twice a week. There is also a behavior therapist, but I don't think she has regular times.

She had her first applied physical education session with Coach Tim on Tuesday. He said he didn't push her too much, but she displayed no behaviors - not during the session or in the classroom afterwards. Yesterday, Raquel actually fell asleep in the sensory room when they put her in the ball pit. She was playing around in it and then all of a sudden got really quiet and they realized she was sleeping. Today, she fell asleep at circle time. Hopefully sleeping in class won't be her normal thing. :-)

I also spoke with my new social/case worker at Regional this week. Her name is Heather, and she'll be coming by on Monday, March 9th, to meet with us and go over Raquel's goals for the next year. I think I will have her until Raquel turns five.

It's been a very busy but productive week. Looking forward to a quiet and restful weekend!