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.