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).

School Photos

Ben’s fall school pictures came back today… he wasn’t cooperating with them this year and they took him down on three different occasions to try and get a good photo. The picture place sent home two packets for me to pick my favorite. I liked both for different reasons – one he is angry and getting ready to pull off his trach nose, which will always remind me of what Ben was doing at this age… a lot of trach pulling. The other he is wearing his implant and showing off his cute cowlick at the back of his head, which I also like. I called to see how much extra I would have to pay to keep both and was thrilled when I was told nothing. So here are both shots.

All good things come to an end...

Ben's soccer season is officially over and he had his last Hippo-Therapy session for the fall. We've grown accustomed to having all these activities to take Ben to, I don't know what we are going to do with ourselves now. It's going to be a LOOONNNNG winter for Ben :)

Trick-or-Treat

Ben was a giraffe this Halloween. I under-estimated his size, so his costume didn't fit. After a few modifications, we made it work.

Or so I though... the hood wouldn't stay on. So Ben went as the headless giraffe and his car became part of the costume.

Something about the padded belly gave Ben super strength and he kept on getting on his stomach and pushing up really high... higher than ever before! I've saved the costume for future therapy sessions.