Saturday, April 12, 2008

The Napkin

People sometimes hear me refer to Gage as "a special case" when I talk about him and his ci. So why is he different, why is he special? Let me explain. These are impromptu drawings made by Gage's ENT.


The first one is a typical ear and he's showing us how he had to remove the canal and the middle ear basically to insert the electrodes into his cochlea. He then filled the voided space with belly fat (taken from Gage, and YES I DID OFFER, but it had to be from him). Now the other picture is the one that nearly broke my heart the day it was drawn. He was four months old and was being sedated for a simple tube insertion and ABR hearing test. Yes, this is the day he showed absolutely no response on the ABR and we found out FOR SURE he was in fact deaf. That's not what broke my heart. Instead it was when the doctor came in and told me he couldn't even insert tubes into my baby's ears because they were so tiny and looking at the CT scan he informed us that Gage's ears were "severely deformed inside". Not exactly what I was expecting. I felt like they were telling us that nothing would help, he's going to just continue to have ear infections, he's never going to hear, and have a nice day. That wasn't the case at all, only a mother's interpretation of being caught off guard and hearing that her baby had deformities. Anyway, so you can see why he's a special case. He said his bones were fused together, some things unrecognizable and his cochlea didn't have enough curves. All of this was on a napkin he grabbed as he told us the news. He quickly drew a picture of a "normal" inner ear and then Gage's cochlea as he explained. So yes, he's a special case, his implant was placed a little differently than your average patient and then his ear was sewn shut. You can see here, you can't even tell it unless you know it. We opted for the surgery to be done this way because we already knew that his facial nerve was out of place as well. So this is why he wasn't successfully implanted until age three and a half. Kids these days get implanted much younger and I'm right there with ya folks. I would have implanted him younger also but it just wasn't a possibility for Gage without all the research and investigating it took to find a way to help him hear his firetrucks. That's the only sounds he could hear at that age so he carried firetrucks on his shoulder like a breakdancer in 1980 with a boom box or radio. All of this came back to me today because Gage is now almost seven and has yet another ear infection...in his unimplanted ear...just something we deal with.

4 comments:

Jodi Cutler Del Dottore said...

Val,
They are getting SO big and smart. They are overly photogenic *smile* I remember reading your blog for the first time and getting majorly choked up about Gage's situation and yours as his mom. Still gives me the same effect even after all this time because I see what an amazing child he is becoming...thanks to your tremendous dedication. Keep it up, girl and kiss those kids for me! Jodi

Abbie said...

Ugh, poor little guy! I have no idea how I dealt with ear infections when I was a kid because as an adult, i'm flat on my back.

How is he feeling now?

Val said...

he's chasing his sister around the house...so he must feel fine!!! did I mention it's spring break...will I survive?

Loudest Mom said...

Val-

Thanks for sharing about Gage's special ears....that is really fascinating. We have an ENT who draws pictures as well :)

Best of luck this week!!! I'm glad we're now done!