So, if you're my friend on Facebook, you might have notice the status updates mentioning Nate got his external part of the cochlear implant last week, and it seems to be working! I'm sorry it took me so long to get a blog out for this, but it's been a little busy around here lately.... not that it isn't that way on a normal day, but you know what I mean right... right?
Nate got the "processor" part of the implant last Thursday (Jan. 29) and they did the initial programming. The ENT told us that he was able to get all of the electrodes in, so that will provide optimal stimulation. The technical part of all this is head-spinning, so I will explain this as I can understand it. Each electrode is programmed with a different stimulus. They test each one, and check for nerve response and also physical response. Now, Nate has significant brain damage, so his response isn't like a child who's just DEAF. We would watch Nate during the testing and it SEEMED like there was response. He would maybe blink at the extact same time everytime, or he seemed to move around more during the testing. I was wondering if what I was seeing as response was just my imagination, wondered if I was generating his responses in my mind. But, I WAS seeing something.
So, we took him home and then took him back the next day and they did another programming. The audiologist thought she was seeing a little response as well. Maybe, she just was getting used to Nate now and knew how his responses flowed. I don't think she had ever worked with a kiddo like Nate before, so this was new and she relied on US a lot to tell her if we thought he was uncomfortable with the levels or not. But there was also two other ladies in there to witness anything as well. So, between all four of us... we felt really good about his reactions.
This week, we just focused a lot on talking to him, singing to him, pretty much bombarding him with sound.
The most annoying thing about this device, is that the magnet that attaches to the internal magnet comes off ALL the time. Since Nate doesn't sit up, he mostly reclines or is laying down unless we are supporting him. So, the second he turns his head to the right-- the magnet pops right off.
When we are feeding him his food with a spoon in his high chair, he's constantly turning his head back and forth, so we stick it back on everytime we notice it's come off. I think how messed up would that be to have sound- no sound- sound- no sound. I tried it with my IPod, it's dizzying. Try full on sound, then hit mute, then sound again. Can you say VERTIGO? Yowza!
Well, we will try to work on keeping it on better, it's just hard.
So, Craig took Nate yesterday back to MWEI and they did another programming. And there seems to be even more and better response! Terrific! We are very happy with that!
I have to confess though, we are supposed to work with both the cochlear and his hearing aid on at the same time! I HATE that hearing aid! We've had two ear molds made and neither of them fit very well, so it would whistle everytime he made a move. We are waiting on yet ANOTHER mold to come that hopefully will fit better. It's such a shame that we spent so much money on this thing and he hardly ever wears it. It actually makes my stomach turn a little bit.
Well, in TND news... we got our first load of sweatshirts in and they are awesome! I wear mine everyday, in the morning when I wake up. It's sooooo warm! If anyone would like one, either contact me because I have a few of each size here at the house, or you can email Carrie and she'll order you one!
We are planning on doing the Meet Nate Day at MAM fundraiser again this September and like I've said before, we are wanting to do it on a Saturday. Since we already did this once, we think this next one will be even bigger and better! And we have some REALLY COOL things in the works for that! I will have some news about that hopefully soon! Oh you just wait people.... it's gonna knock your socks off! Also, we are planning a Firehouse Chili Cookoff for May (hopefully) and once we get some more details ironed in for that, I'll let you know!
We've been laying low for a while, but TND is kicking back into gear! We are ready to jump start some charity PEOPLE!
Okay, well I must be off to feed the Nate Dog himself.
Love you all!
Carolyn
Hi! I just stumbled across your blog and wanted to offer you some advice for Nate's CI's. My son is profoundly deaf in both ears, is wearing aides and we hope to have bilateral implants asap (waiting on insurance..ugg). I wanted to let you know about these hats you can buy for Nate that will help keep the magnets on his head. Other CI parents have LOVED them and they say have helped keep their sanity! :) If you go to www.silkawear.com they make these hats especially for kiddos like ours who need them. (Don't worry...I don't work for them or anything!) Also, since they are kind of pricey ($50 each), we have used our money from government grants that we qualifty to purchase them. Okay...one more suggestion...as far as the hearing aides go. (I wasn't aware of this until recently), put A TON of the cream (otoferm) on his aids until you get the new molds. I wasn't putting enough on our son's aids and adding more helped a lot. And we've been getting the molds double dipped which helps the molds last longer. Sorry if you already know all of this, but wanted to offer you some little lessons I've learned that have helped make our lifes a bit easier. With prayers for you and of course...beautiful little Nate! :)
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