Made of Gray

The Start of Her Voice

Holly D Gray5 Comments
Today has been a nice relaxing day. The week was a little crazy with appointments but I guess that is something that won't be going away. So no need to dwell on it.

On Monday Eric, Caleigh and I took cookies up to the NICU for Caleigh's 2nd birthday. We did it last year too and I plan on doing it every year. The nurses and doctors are one of the main reasons Caleigh is still with us and for that we are forever grateful. Plus after spending an eternity in the NICU we feel like we made so many friends. Of course, me, the bad photographer, forgot to take pictures...maybe next year.

Thursday we took Caleigh to the neurologist. It was our 6 month check up. He was once again impressed with Caleigh's development. I asked about botox and we made an appointment at the CP clinic. We've been before but didn't like the doctor. So this time we will be seeing another doctor with hopefully a different opinion. The type of CP Caleigh has is difficult to treat and she needs a longer evaluation, not just 2 minutes. She isn't always spastic and she isn't always floppy. Athetoid is the type if you want to google it or maybe I will do a post on it some day. We talked about seizures at the appointment and pretty much there is still a big chance Caleigh could have them in the future, but her EEG that we did in the Spring showed great improvement over all the others. Still abnormal, but it always will be. There isn't a day that goes by that I don't think about seizures while watching Caleigh. We left the appointment with the choice to come back in 6 months or a year. We chose the year option. Now if only we could do that with GI!
Friday was a busy day. It started off with some civic duty regarding a 6 year old hanging out on the side of the street..alone. Once we cleared that situation we headed to the park and took a short walk. We came back home to our PT appointment. It was an important one. Our PT had set up an evaluation with her company Augmentative/Alternative Communication (AAC) person. This is the person to have when your kid can't talk. She evaluated Caleigh using her switches and then boosted "she totally gets it" "she knows." She made many suggestions including cause and effect computer games, a photo album of Caleigh's favorite things and a low tech communication device so that she can start making choices. It was a very informative appointment and I'm so glad we did it. We headed off to speech therapy where we got more suggestions.

I came home with my head spinning and I immediately went to the internet looking for devices and websites. The AAC lady is also sending me a list of resources and websites to look at. When we were getting all the suggestions I asked about funding. Who pays for all of this? The lady said that insurance and medicaid doesn't pay for the low tech devices and it is a pure struggle to get them to pay for the high tech computer like devices. If anyone out there has information on how to get them paid for please let me know! It was suggested that we look at Boardmaker and the software. This device combo is a little over $1000. There is also a SuperTalker which is similar to the Boardmaker but a few hundred dollars cheaper. It comes with a few less bells and whistles but generally they are the same. Our local school district uses the Boardmaker version. I'm going to make some calls on Monday to see about funding or loaners, but from what I understand it probably won't happen. I've searched for used devices on the internet with no success. Apparently there is some rule about being an authorized re-seller. How do families pay for this stuff, seriously? $1000 here $200's getting crazy! I'm so eager to get this for Caleigh and to get on the road to communicating with her. These devices could be her voice...why would so many people deny her of that including those that told me to "wait until she gets in school, they will teach her that." Of course we are still hoping and expecting Caleigh to speak to us using her mouth, but we need a path for education and a path to block any frustrations she may be having. It's just nerve racking and we can't seem to get these things for Caleigh fast enough. Any Thoughts?

On Monday, we have a 9am appointment with Endocrinology. Our Pedi came through and got us an appointment. Will be looking at a possible amino acid metabolic disorder that causes body odor, strong urine smell and weight gain. Caleigh is on 700 calories a day. That's nothing, normally developing kids her age are getting about 1200 calories per day. Caleigh's calories should be lower than the average kiddo, she isn't moving as much as the normal 2 year old. So she's on this diet and has been for about 5-6 months. The goal was to help Caleigh grow taller, but to maintain her weight. Her weight back then was 23 lbs. On Thursday Caleigh weighed 27lbs 11 ounces. She has grown longer, but not much. She continues to gain a pound every 2-3 weeks. So I'm interested to see what the doctor thinks.

We also have an appointment with the eye doctor. The last time we saw him was December. I think we went too long in between visits but scheduling was terrible. Back in December he wanted to do the strabismus surgery. We decided not to, mainly because he used the word "guess" about 3 times during the conversation referring to cutting the eye muscles. We'll see what he thinks this time around.

A lot to think about, and a lot on the to do list this week.

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