Made of Gray

Cool Head Gear

Holly D Gray8 Comments
After going back and forth for over a month Eric and I finally decided to go ahead and try out the cranial band for Caleigh. I'm not sure why I was totally against it? Maybe the look, maybe the hassle and maybe because some of our doctors think that it is merely cosmetic and not necessary.

Zealous readers may recall that we were thinking about the cranial band because Caleigh has Plagiocephaly. In Caleigh's case the right side of the back of her head is flat. Because of this her ears and eyes are misaligned and the front right forehead is pushed forward a lot. This can cause developmental delays, vision problems, and basic balance depth perception issues. Lord knows we don't need any help with those areas so we decided to go ahead with it. As long as Caleigh's brain is growing correctly we should see some small improvement in the next week or so. How long she has to wear it depends on growth. Initially we were told somewhere around 4 months. I'm praying that it takes a lot less time, but well see.Caleigh is just now getting used to the band and I have to admit so am I. I hated it the moment we put it on, but everyday has gotten better. We are still having issues during sleep times, but I think it is getting easier. I'm pretty sure I wouldn't won't to sleep in one either. We are still doing spot checks, taking the band off to make sure there isn't any rubbing or red spots. As soon as we get a perfect fit Caleigh will be required to wear the band 23 hours a day. I'm going to try to decorate the band in the next few days so it won't be so medical looking too.
We also took a trip to the eye doctor on Friday. I really hate going to doctor appointments these days. Everyone is coughing. There is snotty kids everywhere. The Germaphobe in me shudders the minute we show up. Eric and I have a system. One of us does the touching of the doors, sign-in sheets, dealing with paperwork and the other stays outside in the hallway with Caleigh. We have a huge thing of purell that gets used often. Hopefully this tactic will be enough to make it through the winter.
So the eye doctor....Caleigh still has a slight far-sightedness, but not enough for glasses. It was hard for him to get a great look at her eyes because she closes them the instant any light is shined in. The not so big shocker was that the doctor wants to do surgery to fix Caleigh's eye crossing or strabismus. I knew this was coming. Patching isn't really an option because her strabismus is variable and both eyes do it. Eric and I are still thinking and reading about surgery. The eye crossing has to do with a muscle imbalance. The muscle imbalance has to do with cerebral palsy. Since her strabismus is so variable it will be the doctor guessing as to how much work needs to be done to the muscle. This one surgery could lead to many eye surgeries because cerbral palsy is variable, Caleigh is still growing and her muscles are still changing, and the doctor could over correct the problem making her eyes turn outward. Generally children with CP have 2 or 3 of this surgery to correct the problem. The good news is that it is an outpatient surgery and Caleigh would be home the same day as long as there isn't any issues, but we all know how much Caleigh loves surgery {sarcasm, sarcasm, sarcasm} So we will think it over, talk with our other doctors and of course research some more.
We have been busy and that helps take my mind off the overall picture. Throwing it back to the present. Thank you to everyone that commented with encouragement and thoughtful words. I will be the first one to admit here that this is hard. It's hard seeing your child go through so much and because of this we are forever changed in everything we see and do.
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