Sick House

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).

Ben's Body Is His Canvas

Ben has added coloring with "washable" markers to his daily repertoire. We know when he wants to color because once he is in his high chair, he pushes his sleeves up to his elbows (this is what they do at school before starting a craft). At first, all he wanted to do was color on two somewhat blank pages of his coloring book.

Once that page was filled, he then moved on to the tray of his high chair. Since it wiped clean pretty easily, we allowed him to have his fun. That excitement wore off quickly and he decided to start coloring himself next. Now we can't get him to stop. He colors lines up his arms, in his palm and on each one of his fingers. Once we wipe him clean, he starts the coloring all over again. And when he is done, he admires his work. As much as I don't want him coloring himself,I can't help but laugh watching him.