Friday, December 17, 2010

Follow-up with the Neurosurgeon

Kenny saw the Neurosurgeon yesterday. He said that in reality there is actually more fluid on his brain than before, but it's obviously moving with the ETV proceedure that they did. But there may be more fluid too, because with such significant injury to the brain, it doesn't grow as a typical brain would. So his head growth has slowed...thank goodness. It's like a puppy growing into it's paws...Kenny is growing into his head! LOL! He had his RSV shot today. You know it's bad, when you go to Surrey Memorial, and the nurses remember you from when you brought a kid in 3 years ago for RSV shots!!! So we go back in 3 weeks, and then every 4 until the end of flu season! We are slowly getting ready for Christmas! I'm so ready for the break from appointments! If I were to write down an average week out for people, I think it'd make their head spin! LOL. Maybe I will in the new year!

Friday, December 10, 2010

Interesting informations!

I got a call from Bio-Chemical disease control for Kenny on Tuesday. They are now asking for blood work from Gary and I. If you look at the requistion, it shows that they are looking at 1p31.1, I assume a specific gene. What this means, I don't know. This waiting game sure makes me sit on egg shells. I didn't really care what or if they found anything when we began this with them. But now that there may be some sort of answer the curiosity is just killing me!!!

Kristen has been registered for Kindergarden!! WOW! My little CHERUB sure has come a long way! We also had mapping for her CI on Wednesday, so I was able to ask about how to go about and when to use the FM system with her. I do want it for her hearing aid side, but I'm not wanting to use it with her CI side. I was always under the impression that because it is a different was of listening, (different than hearing aid) that we need to allow her to hear as natural as possible. I did try the FM system and had found that it just confused her. Really, when she wears her CI, it's like she's hearing like you and I. Her brain has worked out the important information and knows what to listen for, well with voices anyways. I can be in a gym, and she can hear me call for her from half way across! So I wanted to see if she would be fine without the FM in school first, before we try it out. Well her audiologist stated that they have done more research on CI's with FM systems. Unless Kristen can tell me if there is interference then no. It also takes away alot of the background noise when it's on as well. They can't say how many decibles, but in a Kindergarden setting, she may miss out on peers conversations. They are also finding that the FM with the CI would be more useful in lecture type settings. Where it's all about information and direct note taking learning. I am pleased with these answers as this is how we use the implant anyways, like an aid, but like she's hearing when it is on. Don't get me wrong, I do know she's deaf, and with out it she can't hear a thing. So it is an aid, just not like a hearing aid. the hearing aid will have an FM coupled with it. And if we need the equipment the school is responsible for getting it for us. But until it's needed, it's best to allow them to hear like any other hearing child, just with an implant. And her brain has worked out what's important and what's not, so we're home free! Now to work on getting that darn bi-lateral!!!