Ben has been much healthier this winter than last and up until last weekend he hasn't been sick once. But he did catch a cold and is currently still trying to get over the hump of it. Round the clock nebulizer treatments of Xopenix and Atrovent seem to be helping some, but I wish there was something more I could do (seems like because he doesn't walk he has trouble breaking up the mucus in his chest). Ben got the Pneumonia Vaccine this year so I'm hoping that helps prevent this from moving into his lungs. I too caught what Ben has and Mike has been the healthy one caring for us sicklings.
Not feeling 100% has been causing Ben not to sleep as well and have a short fuse (can't say as I blame him). But I'm concerned because he is starting to take his anger out on himself by scratching his face all up (and I'm keeping his nails trimmed really short but that doesn't seem to be helping). I don't know if he is doing that because he feels the pressure from the congestion in his head, he has a headache or is just developing a new bad behavior in place of the trach pulling that he has stopped.
I've heard parent's of CHARGE kids say that behavior is the hardest part of CHARGE, even harder than all the medical issues and I can see why. Because so many kids with CHARGE have hearing and vision impairments, communication is very difficult with them. Most understand a lot of sign language but actually using it comes harder for them. Basically they are dealing with the same frustration kids deal with at the "Terrible Two Stage" their entire life. They know what they want, but have trouble getting it out. And because Ben can't walk or get into sitting on his own, he has to rely on us for almost everything he wants. And the older they get, the more wants they have and the more frustrated they get. I'm surprised most kids with CHARGE aren't upset all the time... I probably would be :)
I'm hopeful that Ben will continue to increase the amount of signs he actually does and in turn that will decrease his frustration level. And in the meantime, we are trying to make our house as accessible as possible for him. We adapted a light switch so he can turn it on himself (he enjoys this) and we ordered a floor level toy storage shelf to make more of his stuff accessible so he doesn't have to rely on us to pick out his toys (which he doesn't like).
4 comments:
I hope you and Ben get better soon! Josh would scratch his face a LOT! Even with trimmed nails he would manage to maul himself sometimes. That is great that you got the light switch for him, and I'm sure he'll love the independence of getting his own toys from his shelf. Sounds like Ben has a very smart, loving mommy on his side! Get well soon!
Feel better soon Ben and Amy! Good job staying healthy this long, Ben... now get better ASAP!!!
Amy, coming on your blog tonight reminded me that you asked about Gracie's chair. I am so sorry... I forgot... I will email you this week!
We did a low set of shelves for Gracie a few years ago, too... so she could scoot over and get what she wanted. Best thing we did for her! I know Ben will love it! :-)
What did you use for the light switch? (Although, if I did that, people in the neighborhood would think we were sending signals! Gracie wouldn't ever leave it alone, I'm sure!)
I know all to well the issue of behavior and communication. Eva gets so upset and frustrated when she cannot do something or have something. Sometimes it even painful for us because she will pull our hair or pinch us.
This is a HUGE reason I want to move her to the school for the deaf so we can help her communicate better with us.
Good luck with everything and I hope you all feel better soon.
Hugs,
Crystal and Eva
Hope you and Ben are feeling better soon, Amy. I know what you mean about the delays in communication leading to frustration and behaviors for our kids. Katie is starting to communicate a little more expressively now, but it's still very slow-going for her. And she definitely gets even more frustrated when she doesn't feel good.
I wonder if there are any agencies out there that would come to your home and do an assessment of other adaptations you might make to make things more accessible for Ben?
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