Pre-K Evaluation - Take 2

Yesterday, at 8:30 in the morning, we took Caleigh for her second evaluation for public school. The evaluation is a formality at this point. Mainly because the whole reason for an evaluation is to determine services. Even though the school is aware of Caleigh's needs, I wanted to start the process fresh from the beginning and asked for another evaluation.

Caleigh is a completely different kid from this time last year. Last year our GI doctor didn't want her attending school. She had just come off of TPN and still had her central line. She was fragile medically and emotionally we weren't ready for the risks involved with her attending pre-k. This year is a whole new ball game. Caleigh has been healthy for nearly a year. It's been a year and five months since Caleigh has been admitted to the hospital. Not to mention academics. Totally different kid.

Caleigh's evaluation meeting lasted an hour and a half. There was a diagnostician, speech therapist, PPCD teacher, our vision therapist & orientation and mobility specialist present. Caleigh was a rock star through the whole meeting and really ate up the fact that there was a room full of people listening to everything she had to say on her iPad.

We discussed Caleigh's health, needs and a way to properly evaluate her. This time there wasn't any formal tests. There won't be any IQ numbers given. Caleigh qualifies for PPCD under the orthopedic impairment category. Everyone agreed that if given the proper communication tools, Caleigh would flourish. Everyone in the room agreed that Caleigh will be in a regular classroom with her typically developing peers. The pre-k teacher was a bit concerned with Caleigh's advanced cognitive abilities and quite honestly what to do with her in a classroom setting. We all agreed that Caleigh is 3 years old and school will be fun for her. One day she may get bored with the curriculum, but at this point she will probably consider school to be an enjoyable experience. Basically, we will deal with that then. So when goals were brought up we focused on the social aspects of a group setting. Communication and power chair driving are also biggies. Teaching Caleigh that the outside world doesn't revolve around her is a big goal of ours. Patience Patience. Although she is 3.

Overall, I'm really pleased with the outcome of this evaluation. I feel like Caleigh's strengths stood out and everyone was on the same page as far as what Caleigh will need. I have high hopes this time around. I hope that everything stays organized and well planned. I hope that Caleigh's needs are addressed in the best manor.

When asked if she wants to go to school, Caleigh now says "yes." I'm also ready and I think that means a lot in the whole process. Without an open mind there really can't be progress from both sides. One year later and one year wiser.

Caleigh's ARD meeting will be scheduled in August. School starts August 22nd.

All of the photos are from Caleigh driving her new baby Cinderella doll around the house. The new baby doll was part of the incentive plan we used to have Caleigh cooperate during the meeting. AKA...bribery.

Power Chair Driving

This past week our DME people came back out and set up Caleigh's power chair with head switches. The directional switches are embedded in the headrest of the chair. This means that Caleigh can simple put her head upright and straight back to make the chair go forward.

Right now we only have the forward and right switches activated. She doesn't seem to interested in the right switch which I think may be positioning related. Caleigh's endurance in the chair is higher than it ever has been. She smiles and takes breaks often. The above video was taken a few days ago. We try to get outside in the morning before it gets too hot. This morning Caleigh drove her chair around the backyard for an hour. Longest time to date. There wasn't a melt down and no frustration. I simply asked if she was done driving her chair. A lot of that hour was chewing on her hands and looking around, but the big difference was that I left her alone. I sat on our hammock and enjoyed our quiet time rather than spouting directions or moving the chair for her. I did have to help her get out of the fence, but I think she enjoyed hitting it. It's nice to see her head upright when her chair is moving. That just so happens to be a nice bonus.

Caleigh tells us that driving her chair with her head is easier for her. There are still a lot of adjustments to make, but I think head switches will be with us for quite some time. Caleigh says that she likes it and right now we're happy with that. As long as she is content while being in her chair, I think that makes it a positive experience that she will want to come back to.

Caleigh's Communication Part 5 - Tobii

On Friday we received our trial demo of the Tobii C15. Complete with CEye Eye Control Module which means that Caleigh can look at the choice she wants on the screen and the eye-gaze system recognizes that choice and says it out loud.

It is also capable of using switch scanning as an accessible method. Right now we are using the eyegaze system and then in a week or two we will try the switch scanning depending on how things are going.

This loaner device is huge. The C15 is the largest in Tobii's line. At this point it is stationary on our dinning room table. Something so big is definitely made for a wheelchair or table mount. They do have smaller devices if we choose to purchase one.

The reason that Tobii is high on my list of must try communication devices is their software. They have 7 different software options and each does something incredible. You can also run more than one software at the same time. Our loaner is running Communicator and LiterAACy. My favorite right now is called LiterAACy. You can check out the link to see why I love it so much, but mainly the awesomeness is due to it's word predication capabilities. It also has fun stuff like a calculator, diary, phone, and an area that Caleigh could save files that she creates. Tobii also uses SymbolStix which are the same images/symbols that Proloquo2Go does. Familiarity is always nice.

So far, 6 days into the our little demo wonderland, Caleigh has successfully selected words and choices a hand full of times. She tells us, after her little sessions with the Tobii, that she likes it, but that it is hard. Even though this is the best eyegaze system we have tried; it's still not perfect. Caleigh's movements make it hard for the system to read her pupils. In fact we are using the demo mode because we haven't been able to calibrate the eyegaze camera to her eyes. Talking with Caleigh's eyes may not be the right route, but we won't know until we try it.

We are allowed to keep the trial Tobii for a little over a month. So I'll update again before we return it.

Fabulous Father

Happy Father's Day to our favorite Daddy.
Strong as a rock. Soft as a teddy bear.
Caleigh and I love you very much!

Swim, GI & School

As you can see swimming in our little pool has become a daily routine. We are usually swimming around 5 or 6 in the afternoon. The rush of the day is over and the pool is completely shaded by our house. Caleigh has been doing amazing things in the pool. Normally, Caleigh doesn't roll from back to tummy, but in the pool she is a rolling machine. She flips from front to back and back to front. Being on her belly and kicking is her favorite position. All of the "waves" you see in these photos are from Caleigh kicking. She can make it from one side of the pool to the other. Kicking under water is totally new this year. I have a feeling all the leg lifts that we've been doing in intensive PT and at home are paying off. Caleigh's hip flexibly is getting better. What better way to practice leg lifts than in the water?

We went to the GI doctor since I last posted. Caleigh's doing so well. Our doctor was very impressed. We did decide that at what ever point we want to start feeding Caleigh; we will do a scope and biopsy to look at the enzymes Caleigh has. These enzymes will be able to tell us what she can and can not eat. All of those months, if not years, of trying new foods and waiting on a reaction was just a learning process. There really isn't much of an "allergy." Basically if Caleigh's body can't break down the food with the proper enzymes then she can't tolerate it. We aren't at a point that we want to rock the boat, but it's good to know that there may be more answers in the future.

This past weekend I attended a meeting with our local ARC. They had a speaker whose main blurb is inclusion in our schools and communities for those with a disability. I also watched the documentary Including Samuel twice. I read Disability is Natural what seems like forever ago, but really I reference the book all the time. All of these things paired with talking to our old vision teacher, rekindled the need/want to send Caleigh to public school.

Quite honestly, Caleigh is amazing at academics, I haven't even posted everything she knows, but when it comes to social and emotion behaviors we've been having some issues. I want to believe that putting Caleigh in a classroom setting will help her view of having a disability and also help her achieve the skill of patience. I'll never know until we try.

We have taken Caleigh's health into great consideration. This year is nothing like where we were at last year. When we met with our GI doctor, we talked about having a nurse or a one-on-one aide with Caleigh at all times. For right now, we have agreed on a full time aide. He wanted a nurse, but the more I thought about it the more anxious I became. So I talked to him again and we agreed on the aide to start with. We are anticipating Caleigh being sick with the normal cold & bug stuff for the first 3-4 months of starting school, but with her immune system being stronger and her being older we think she will be ok. If it is too much for her system then we can re-evaluate at that time.

I've filled out a bunch of paperwork from the school. We are doing a second evaluation on June 29th and then we will have our ARD meeting sometime in August after we return from vacation. I feel like I'm back in college. Studying, reading and taking notes. I've made a large binder and I'm finding out everything I possibly can about Inclusion. Our goal is to have Caleigh mainstreamed in a classroom with her typically developing peers. Our philosophy is to start this battle, and yes it is a battle, now in pre-school rather than later down the line. Academically Caleigh needs to be exposed to everything a child that walks and eats by mouth is exposed to. I'm not sure how our school district will take this approach because it is pretty much a rarity in Texas. We'll see, but I'm hoping for the best.

An interesting tid-bit from the documentary "Including Samuel," and I'm para-phrasing here. In the legal case Brown vs. The Board of Education; The Board of Education actually stated that if we let blacks into our schools then what's next? Will we then integrate the disabled too? That was their argument. Having a disability is very segregated even today. Putting our children in a special education classroom at the end of the hall is very segregated. Most of those involved in the Inclusion movement believe that being disabled and fighting for your equal rights is really the final civil rights movement. I agree.

Growing & Growing

Last Friday we went and picked up Caleigh's new glasses.

They are really similar to the last pair. Both purple, both plastic frames, similar shape. The big difference is that this pair is 2 sizes larger.

Caleigh is growing like a weed. Her good sleeping habits have been helping her grow. Caleigh's hair is longer, her clothes are tighter and she has just about grown out of size 6 diapers. Her feet are a tiny bit bigger too. She now wears an XS or S in little girls clothes. Toddler clothes are totally out of the question now.

Our wonderful DME people came out and spent two and a half hours adjusting Caleigh's equipment. The stander, power chair, manual chair, walker...all needed a few inches adjusted. They added the i2i headrest to her powerchair and Kidwalk. Caleigh has outgrown her manual wheelchair at this point. So we are working on the decision of what chair to get next.

We always get comments on how big Caleigh is getting. Most ask something along the lines of how on earth we are going to keep caring for her. Caleigh hears everything. She understands everything. So my usual comment is that we are working on driving the power chair and that being able to carry and care for Caleigh is a blessing.

No matter how big Caleigh may get, we will forever be grateful that she is able to do just that! Besides, Caleigh will always be our baby girl....

3 years post STEP

Today marks 3 years since Caleigh had her last intestinal surgery, the STEP procedure. STEP stands for Serial Transverse Enteroplasty Procedure. We nearly lost Caleigh following this surgery. We spent a month in the hospital, but overall, Caleigh's life took a turn towards the better because of this surgery. We can't believe it has been 3 years. 3 years....wow.
Life isn't perfect, but Caleigh's quality of life is 110% better since the surgery. The rare occasional need for TPN and elemental formula tube feeds are the routine. Eric and I will definitely take that over the alternatives. We can't believe that at one point we were talking intestinal transplant. To see the way Caleigh has grown from her own nutritional absorption is just an amazing miracle. Functional short bowel syndrome. We'll take it.

The scars are still very real both physically and emotionally. Caleigh's beautiful torso is a daily reminder of her struggles. I touch her belly everyday and tell her just how gorgeous her tummy really is. It's truly my favorite part of Caleigh's body. Emotionally we truck on, but never forget.

Absolutely no regrets.

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.
- Unknown