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.

Good News

Ben had his cochlear implant checked and no new electrodes need turned off. GREAT NEWS! His audiologist spent an hour checking every electrode via the computer and then manually while we watched how Ben responded. Based on those responses, we made some minor tweaks - mostly having to do with bringing down the high frequency threshold. And since the appointment, Ben has been wearing his implant while turned on during all waking hours. The timing is perfect too because Ben's last day of school is tomorrow and they have a choir assembly put on by the high school students to attend. Now he will be able to hear it and enjoy it!

Cochlear Implant Confusion... again

Ben had his follow-up today with the surgeon who gave him his cochlear implant. I was very interested in his thoughts on why Ben isn't wearing his implant when it is turned on. We have ruled out behavior reasons because he wears it while turned off about 4-5 hours a day (we want to keep him in the habit of feeling it on his head even when off). He said Ben might not be wearing his implant for three reasons:

1.
He has an ear infection – he checked and he does NOT have one.
2.
He just needs his implant re-mapped/re-programmed monthly based on the different way his brain processes information and how it is always changing. Kids with CHARGE and kids who have had strokes don't process information through the same brain channels as you or I would. They have to find a different way around the damaged areas and he suspects the auditory channels work the same way.
3.
He is having a soft failure of the implant, which happens less than 1% of the time and we are HOPING this isn’t it. A soft failure is harder to detect than a hard failure, which is just the implant processor giving you an error. A soft failure is when over time, an electrode here and there stops working and needs to be turned off. Eventually, so many give out that the implant isn't functioning. During our last mapping, two electrodes were not functioning and had to be turned off. On Monday, we go back to Audiology to check into this further. If any addition electrodes need to be turned off, he suspects this might be happening. A catscan under sedation would then need to be done. If it is a soft failure, then ALL internal hardware (which has been placed right by his brain) needs to be removed and new hardware needs to be implanted. Because Ben was such a difficult implantation, the doctor is worried about having to perform the surgery again.

We are praying it isn't option #3. Will keep you posted after our appointment on Monday with Audiology.

Blood Work Results are IN!

Ben's blood work results came in and I'm pretty excited with the news. His Vitamin D is very low. May seem odd that I'm excited over a low reading, but that just means we don't have to put him through further, more invasive testing of his growth hormone for now. Instead, he needs to add a Vit D supplement to his diet and retest his blood again in 6 weeks to see if his number has raised (the future blood work is the only down side). If it has, our hope is in time his bone density will also increase - but that is a slow process.

An Apple a Day Keeps the Doctor Away

If the old saying is true - "An Apple a Day Keeps the Doctor Away" - then Ben should be in good shape! Ben has this love for my bowl of fake display apples. He LOVES to play with them... and not in the way you would think. Since the apples are so motivating, I figured this was the perfect time to work on having Ben use his sign language (Ben has shown us through picture cards that he recognizes the sign for about 60 nouns/verbs, but was only signing two things himself - "more" and "shoes"). So I started working on "sit" and "apples". Both requests he needs to do for apple play. "Sit" is because he needs us to sit him in his highchair first. It is amazing what a little motivation can do. It only took a day or two of hand over hand every time he wanted the apples for Ben to realize that when he signed these two things, he got EXACTLY that. I didn't start taking the video until after he signed "sit" but did get him doing "apple" and "more" and EVEN using them together to request more apples!

Pillow Talk

Ben recently started using a pillow. Even though Ben still needs to be in a crib for safety reasons, dad still thought he would be more comfortable with a little pillow under his head (and I figured typical kids would have a pillow at this age, so why not). I found the perfect one online and Ben took right to it. And I do think he is sleeping better on it - doesn't toss and turn as much. Here is Ben enjoying a nap on his new pillow (yes, he is sleeping in the photos but does so with open eyes because of his facial palsy).