Neurology & Artane Update

In July, before we went on our vacation, Caleigh had her 6 month neurology appointment. It was a good visit and I can't really recall anything negative.

I can, in fact, recall all the positives. The neuro was ecstatic about Caleigh's communication skills with the iPad. She spelled out her name for him and did some math problems as well. He was thrilled.

He then pulled up a couple of Caleigh's brain scans on the computer. He was looking through them as we were talking. He said "it grew." I thought he meant that Caleigh had grown so I acknowledged him with a "yes she had a growth spurt this past spring." He said "no, her brain grew. I've never seen anything like this." At this point he was all kinds of excited. Eric and I told him that her head measurements had grown, but we just figured that was normal. Caleigh's head has always been 43 centimeters. As long as I can remember that has been the case. The past few appointments were measured at 48 centimeters. That's a 5 centimeter growth. Come to find out he was looking at a CT scan from February 2010, when Caleigh had yeast sepsis in the ICU. That compared to early scans. So her brain has probably grown more we just don't have a newer scan to compare. I saw the images with my own eyes. Areas with nothing are now filled in. Areas that were uneven were filled in. The blank large space that once lined her skull is now tiny. He told us to keep doing what we were doing because we obviously had a higher power helping us out.

So.. Caleigh's brain grew. Kind of amazing, huh?

Give a neurologist/neurosurgeon a child's brain that wasn't supposed to grow and show him it has. Talk about geeking out.

This led him to being totally stoked. He talked more about deep brain stimulation surgery and how they are trying to get the age lowered from 7 to 5. He told us that Caleigh would be the only 5 year old, so far, that he would even want to do the procedure on. I semi-panicked about voluntary brain surgery and he could see it on my face. I told him that I was going to shut down on that subject for now. My body can not take the thought right now.

At the appointment, we decided to go up again on Caleigh's Artane dose. This medicine has truly been a success for Caleigh. We've seen huge improvements with just this latest increase. Today marks one year on the Artane. I remember in the beginning being told horror stories. I remember researching like crazy to find others on it. I was even told how a child died of an heart condition after being put on it. I was scared to try something so voluntary for a movement disorder, but we finally took the plunge and I can honestly say that we couldn't live without it at this point. One year later, Caleigh is now on 18mg a day. The main improvement that we have seen with this increase has been Caleigh's ability to stand for long periods of time without jerking and falling. Standing at the beans and rice table and couch are daily routines now. She is getting stronger with the ability to stay longer. Once things settle down in the intestine department we may try to go up on the dose once again.

Great news from a neurologist is always a happy day. Hoping we can have another in about 5 months when we go back in.

Abilities Expo Houston

On Friday morning we packed up and headed down to Houston for the Abilities Expo. I had this planned for about two months. So I was excited to hit the road. We had been talking it up to Caleigh for awhile now. She was excited too.

The expo was just like any other expo/conference I had been to. There were vendors, dealers and vendors/dealers doing workshops. The cool thing about this one was the atmosphere. For us this wasn't about checking out the stuff. It was about exposing Caleigh to the world of people, just like her, with disabilities. None of us have ever been in a room with so many wheelchairs, and frankly, it was awesome.

Caleigh got to ride her very first tricycle at the expo. She loved it and kept asking for "more." We plan on trying to get her one. It may look like a regular tricycle, but of course anything disability related cost a fortune. This little bike is about $3500.

Today before we left, Caleigh got to ride the tricycle again. That time she yelled the whole ride because she was so excited. Caleigh wasn't making the pedals go on her own, but I think she could make it happen with practice. What a fun way to be a kid.

Eric sat and stared at this little number forEVER. He is convinced that Caleigh needs one. He made me take a picture of it. Apparently they are really popular. There was a guy driving around with his gun mounted on his. Maybe Caleigh can get the power chair driving thing down before we add a camo-gun-chair to the mix. ahem....

In the photo above you can see Caleigh sitting in a chair. It's called a Chill-Out Rock'er by Freedom Concepts {same as the trike people}. I loved the chair. Caleigh would need the next size up, but it looked so comfortable. I sat in a large one and it was comfy to me. I was all for having a chair that Caleigh could use in the living room while watching TV. This chair, of course, is about $600. When we went back to the hotel, Caleigh said she didn't like it and that it wasn't comfortable. So there you go. We saved 600 bucks. She doesn't want one.

I think we have found an iPad, tray, Tobii mounting system for Caleigh's power chair. It looks really promising and we hope to get it funded when/if we order the Tobii communication device for Caleigh. Base price on the mount is about $1200.

Caleigh got to meet Mrs. Amanda Hall. She is the current Ms. Wheelchair Texas. We talked to her for awhile and was pleasantly reassured that the Ms. Wheelchair pageants are not a Toddlers in Tiaras situation. The main reason for the pageant is to promote disability awareness and to have a positive role model out there. They also have a Little Miss Wheelchair. It's nice to know that something like this is out there just in case Caleigh wants to be involved some day. I don't think we will push or put her in the pageant, but it's always something to think about. Plus, she definitely has the hair for it.

I think Eric and I have narrowed down the adapted van that we will {hopefully} get, eventually. It was nice to see all of the modified vehicles and their different companies at the expo. We compared and picked up brochures and talked about details with the vendors. Just like the equipment above, we are looking at close to $60,000. For a van. A van. We can cut corners in some areas which might help that number a bit, but we plan on keeping the van until it dies. Hopefully 10-15+ years. The main thing that will push us to get a new van for Caleigh is air-conditioning. Our van has 5 vents and it just isn't enough to cool our easily overly heated girl. We added a clip on fan and that has helped some. When Caleigh's wheelchair needs a growth spurt we won't be able to fit it in the van anymore either. So there are issues, but right now we are liking our set up, especially for the price of free.

All in all, we had a great time. It was a quick get away with a purpose and we will probably go again sometime. Caleigh got a lot of attention for her curls and the iPad. It happens quite a bit here at home, but it was in overdrive in the crowded expo. We met very nice people and even got to see a few friends too.

We are so extremely happy that Caleigh was able to experience this weekend. I talk a lot about mine or Eric's acceptance regarding Caleigh's disabilities, but really there is an acceptance process for her too. Even though she is 4, we want to help her in knowing that she is awesome just the way she is, and just as important, she is not alone. Perhaps this weekend helped.

ARD, IEP & The Start Of School

I’ve been pretty quite about the process of sending Caleigh to school so far. I’m trying to soak everything in and not jump to conclusions. Going with the flow has worked and I’m really not all to stressed about it. Like every step in Caleigh’s life, we plan, and then she changes those plans for us. So in being more knowledgeable about the patterns up until now, we are prepared for our plans to change.

Right now we are in a waiting stage. Public school in our district begins on Monday, only 5 days away. Caleigh will not be starting on this date. We are awaiting a solid health care plan and the ARD meeting that will go with it. Our neurologist is out of the office this week. So having Caleigh’s seizure medication on campus with her and having a seizure plan hasn’t been decided as of yet. Caleigh’s fluid and GI needs, while at school, have been taken care of, but again the ARD needs to be set so that we can approve the plan. Basically we are waiting on the doctor. The option for us to start Caleigh on Monday was given, but we have decided to have the full plan in place before she starts.

Our first ARD meeting was this past Friday. It lasted two and a half hours, and quite honestly that was due to the diagnostician’s inability to not repeat herself five times on every single point. The other time issue was our request for a private nurse. The IEP goals are fine. I asked for a draft of those goals well before the ARD. This gave us time to think through them and make any changes that we thought needed to happen. We signed the necessary paperwork to get a PT, OT, ST, AT, Vision and O&M evaluation started. This has to be completed within 30 school days. At that point we will go back to an ARD. Caleigh’s team will be great. Her teacher seems wonderful with 12 years experience. There will be two classroom aides that are very experienced as well. The class size is small. In general we left the meeting in a good mood.

Above I mentioned our request for private nursing. Initially when we asked Caleigh’s GI about going to school he said yes, but only if she has a one on one nurse. Eric and I talked him down to a one on one assistant. After talking with the school’s diagnostician and teacher we realized that although extremely experienced and well trained, they have no experience with a child like Caleigh. Having to explain to everyone we met that children with short bowel syndrome generally don’t go to school publicly. Talking about the many symptoms and death rates can really put a damper on your day. So we started moving forward with a private nurse at school. During the ARD we came to agree to disagree and wait on the doctors to decide the bypass.

The problem at hand is this:

1) We do not have a private nurse to send to school with Caleigh. Eric and I have done everything we possibly can to keep Caleigh in a typical environment without nursing. We have our helper that has been with us for over a year now and that is enough for us right now. It’s just enough respite to achieve what is on our to do list while raising our child at the same time. We care for Caleigh’s needs. Limiting those that have access to her cares is what has kept her as healthy as she’s been.

2) On paper, Caleigh has a g-button and needs 20ml of Pedialyte delivered over 2 minutes every hour. We voluntarily have adjusted feedings and medications to accommodate the 3 hours of school. Asking for a private nurse just for this isn’t justifiable mainly because the school nurse can handle these tasks.

3) Getting a private nurse to work with Caleigh for 4 hours tops, per day, just at school is almost impossible. The agencies that we work with have told me the same. This is the experience that we had when we tried to have a nurse in our home early last year. A trained RN wants to work 40 hours a week just like anyone that needs a full time job. This is completely understandable. I get it. There is also a lot that goes into funding for these nurses. Private insurance, Medicaid or SHARS funding ends up getting a little murky.

When we came home we started talking to other parents about the details of nursing at school. We got some good information. Probably the most important person we talked with is Caleigh. Yes, she is four, but she is a very self-aware four year old. We talked to Caleigh about our worries. Believe it or not she had been listening to all of our conversations and knew exactly where we were at. We asked Caleigh if she wanted someone to be just her helper. She told us “no.” Being miss independent that she is, we talked about the situation in depth with her.

So after the long weekend, Eric and I have decided to send Caleigh to school for the 3 hours without a nurse. We changed our minds. We’ve put a lot of thought into our decision. This has a lot to do with Caleigh’s team. The nurse and her experience and the fact that there will be three adults in the classroom are a huge part of this. After a lot of thought we have to think about Caleigh’s independence and what is best for her. We could worst case scenario this to death. The fact is that Caleigh needs fluids, may have a g-button malfunction or maybe a seizure. It is hard to treat her like she has a central line when she does not. Once Caleigh goes to a full day of school we will have to re-evaluate her needs while at school. Also, if there is an issue that comes up we will re-evaluate. This isn't an end all. It's just the decision for now. Until then, we will go with the flow.

This leads me to another point, getting sick. Everyone has agreed that Caleigh will get sick. All children that start daycare, school or anything in a group setting end up getting sick. The first year is rough, the second year is a little better and the third year is the golden year. The immunity gets better with exposure. This sounds all good and great for a child without intestinal issues. The gut is the first stop for immunity. Something about the bacteria you keep in your gut helps you stay healthy and yadda yadda blah. So our concern is that Caleigh’s immunity will never get built up due to the repeated exposure. Basically if she continues to get sick her guts are at risk for shutting down. If it shuts down she goes to the hospital and a central line would be placed. Again worst case scenario, but something that is in our minds. This is something that we will not know about until she is exposed and put in that situation. Live in a bubble or test the waters for normalcy? Right now everyone is on board for trying.

So as of now, we are waiting on doctor’s orders, the health care plan ARD and then Caleigh will start school.

Of course, all of this could change. Best laid plans and all….

First Haircut

On Friday, Caleigh got her very first haircut.

It was more like a trim.

She loved every minute of it.

Caleigh has been doing so well with new situations lately.

We are super proud of our big girl.

One more thing checked off the list before school starts.

Four

Caleigh, today you are 4 years old.
We woke up singing happy birthday and went to bed singing happy birthday.
You totally understand the concept of birthdays. You were even sad when the day was done.

Today you got the Baby Tiana doll that you wanted.
You told Mommy and Daddy that you were surprised and excited.

We took you to the splash park for the second time. You pranced around like you owned the place. You smiled like you were having the most exciting time. You were not afraid of the buckets and you kept going back for more. When it was time to go, you didn't want to leave.

You took a two hour nap as soon as we got home. As soon as you woke up, you asked to go back to the splash park. We bargained with you, and settled for playing in the sprinklers in the backyard. By the end of the day you were worn out. You told Mommy and Daddy that you had a good birthday.

Four years old. You've come so far from that little two pound bundle. Where has the time gone? You are turning into a stunning princess right before our eyes. We are so proud of you.
Love, Mommy & Daddy

"You is kind. You is smart. You is important." ~Kathryn Stockett

Birthday Party

This year for Caleigh's 4th birthday we had a small family get together. Grandparents, Uncles, Aunts & Cousins. Since vacation and subsequent tummy infection we decided to keep things stress free.



Grampa made pistachio cake for all the party guests and I made avocado pops for Caleigh. Caleigh just laid her head on the table during the happy birthday song.

She ate her avocado popsicle well. Even asking for more.

A good family birthday party. Small and Perfect.

Baby Love

At 3 years 360 days old, Caleigh loves her babies.

I've always yearned for her to "play" with baby dolls. Early on Caleigh would get dolls, stuffed animals and the like for gifts. They would collect dust and we ended up donating a lot of the stuffed animals.

As a child I spent hours upon hours playing with dolls. I was a true girl. I was a little mama. A mother hen. So when I wanted my daughter to play pretend with her dolls and toys, I was quickly reminded that fine motor skills are a must when playing with toys. It was something that was a small hit to me. Plans change as we all know too well. I scrapped it and moved on.

Flash forward to about a month ago and Caleigh's love of her babies has blossomed. We always ask Caleigh what she wants to do. Most of the time she dictates her day by choosing activities on her iPad. If she chooses stander, we ask what she wants to do in it. This week she could care less about music, movies and coloring. Watching a movie has been the reining champ to date. Now, her request is to play with her babies. Stander, power chair, playing on the floor they all involve baby time.

I wonder if Caleigh pretends with her babies or if she just likes to hold them and love on them. Either way, I'm thrilled. I've learned that "playing" with toys isn't always done in a traditional way. I absolutely love that Caleigh has met this little girl milestone in her own unique way.

I asked Caleigh if she knew what she wanted for her birthday. She said "yes." I asked her if she could spell it. She said "yes." She spelled out "Baby Tiana" without an ounce of hesitation. Baby Tiana is just what she will get.

Better with Updates

Caleigh is feeling much better than she was at the beginning of the week. The change in antibiotic was the key. We are still waiting on the results of the stool studies that will tell us exactly what was going on, but the important thing is that she is feeling better. Caleigh's stool is still crazy looking, but her symptoms, other than fatigue, are gone.

We took Caleigh to a follow-up orthopedic appointment. They did another hip x-ray while we were there. Caleigh's left hip is still a tad bit out of socket, but the position hasn't changed in the last six months. So for now we will go in for an x-ray every six months to check it. While we were there we talked about Caleigh's leg length discrepancy. Her left leg is shorter than her right. So we have decided to add a quarter inch lift to her left AFO just to see if it helps her balance and standing. Other than that Caleigh is doing good in the bone department.

Caleigh's first ARD meeting is scheduled for this coming Friday. I was able to talk to her teacher yesterday and she seems very nice and knowledgeable with a lot of experience. I'm not going to lie, I'm having tons of anxiety about the process. The entire summer I really haven't been all too worried, but something about scheduling "the meeting" really set me off. I have the evaluation and a draft IEP already in hand, and things look good to start with. There are a few things that seem to not be in place, or maybe just misunderstood; such as Caleigh's health concerns and overall assistance needs. I plan on making a few calls on Monday to make sure everything is in order for the meeting. Prayers for guidance and clarity during the next week would be amazing.

On a totally unrelated note, we have decided to put Caleigh's Make-A-Wish on hold for the time being. Something else extremely overwhelming and exciting has presented itself. I can't wait to tell everyone about it. I'm about to bust actually!

UPDATE 8/9/11: after many calls, emails, comments and texts I just want everyone to know that no we are not pregnant. No bun in the oven. Not expecting.

Infection

We were able to get Caleigh in to see her GI doctor early this morning. She is in quite a bit of pain. Especially when he was pushing around on her tummy. Her abdomen is still very hot to the touch, but she isn't running a fever. Caleigh's stool returned trace amounts of blood which I'm not at all surprised about.

The consensus is that there is an infection of some sort. The many stool samples that we will be trying to collect the rest of the day are to test for cultured bacteria, parasites, eggs, c-difficile, and giardiasis. It should be interesting trying to get all of the samples. We are switching antibiotics, to Flagyl, in anticipation of one of the above issues returning positive.

Caleigh flinches anytime she is moved and being on her tummy is really out of the question. Tylenol has helped her sleep and comfort levels. Her fluid balance is still good. She is tolerating her feeds well. She retches and vomits only with medicine and fluid boluses so we have slowed the increments of those trying to lessen the volume.

Depending on the stool sample results we might be looking at a very short ocean swimming career for little miss Caleigh. We aren't giving up on the idea, but there will have to be serious precautions if there is a next time.

We are all very worn out. Constant diaper changes, medicine doses, entertaining a sick girl and interrupted sleep is rough. Things could always be much worse. We are very blessed to be able to treat this at home. Hoping the new antibiotic works wonders soon.