Thursday, March 13, 2008

New Accessories :)

CT results from Syd were that the ventricles looked about the same. There was more fluid around the outside of the brain because they adjusted the shunt so they know the shunt is working properly and they know that it is not increased pressure that is causing the enlarged ventricles. So we are left with the cause being atrophy. At least we tried. They will leave the shunt at 80.
Charlie's new hearing aids came today. Actually the aids are borrowed but the ear molds are his. The Red is for the Right Ear and the Blue is for the Left. Dave the nurse did the football on his cheek.
Charlie has slept most of the day. First Jason Norby, the audiologist, came to fit Coop with his hearing aids. The first step is to get him used to the continual wearing of hearing aids then next Tuesday they will be turned on. They suspect Charlie won’t be able to hear anything but we are supposed to look for responses to any noises. Both Jason and Dr. Such-Neibar have contacted the surgeon, Dr Warren, regarding Charlie. There is a monthly cochlear implant conference where they will be discussing Charlie’s case (Mar 25th). Here are the questions they will be trying to find answers to.
1. Should Charlie be implanted at all because they don’t know if he will be able to interpret the sound due to his brain damage? Does the risk of surgery out weigh the potential benefits?
2. Should the implant happen now because of the ossification or should we wait a couple months until he is more stable and we have a little better idea of his alertness may be? Also, hearing can return in meningitis patients up to 6 months after diagnosis, although we are told that in Charlie’s case it would be the difference from severe hearing loss and marked hearing loss.
3. If they decide to implant now, insurance companies usually only pay for one ear but the other will ossify so do we fight to get a second one now too?
4. If it is implanted do we wait to program it (turn it on) until he settles into a calm routine and then re-introduce sound or do we introduce sound first then calm him with sound as a stimulus?
There are a lot of factors that go into making a decision. We'll wait to see what the experts come up with.
I have seen Charlie open his mouth a couple of times today so I asked the nurse if they had some binkis we could try. I was mostly trying to prep him for his big swallow test tomorrow hoping to encourage mouth movement. I forced it in his mouth and at first he didn’t like it but then he tolerated it and finally I think he chewed on it a little. He never pushed it out or sucked on it, maybe because he hasn’t figured out his tongue yet but he was at least chewing on it. BTW- he has not had any more teeth come through in the 6 1/2 weeks we have been here.


Grandma Cheryl holding CharlieTaking a bath
Didn't like sitting or getting wetGetting weighed (in kg)

Nice and warm again

10 comments:

Dallas said...

Comment check-in.

Meghan said...

he's got some serious bed head going on in those first pics - im glad he got a bath to clear that up. phew! i love the binky face...
serious questions/decisions going on . say lots of prayers for guidance i say...
btw, i found a new bathub you may want to get him for home. remind me later...

Charlie Cooper said...

Thanks for the check-in post Dallas! I love to know who is out there watching!!!

Trish said...

So much happening these days and it does seems as though our little guy is making some improvements, however small. He looks like he's getting bigger too! Love the bink pics too, he looks happy to have it there. Good luck with the swallow test today, I'll be sending prayers for success your way. Love you all :-)

Anonymous said...

I'm still not giving up hope that sweet Charlie's brain will heal itself, and that some of his hearing will return. Keep the faith - you guys are amazing. Charlie is one special boy.

Anonymous said...

Regarding the implants - are the doctors recommending that he have two? I have worked with deaf kids for the last 16 years and don't know of any at all who have two. I have asked around to some of the hearing specialists I work with and they don't know any kids who have two either. Although they are successful with a lot of kids, for some they are not at all. In those situations, they like to have one ear, normally the better one, that can still benefit from a hearing aid. Once the implant is done, any residual hearing left in that ear is totally gone, and a hearing aid would do no good at all. So that might be something you might want to consider, while you're deciding what to do. Charlie is looking so much better! He is such a cutie. :) I hope the day will come soon when you will be able to take him home. The prayers keep coming your way.

Anonymous said...

We're still checking in daily too.. Hugs to all of you and mostly to sweet Charlie. We like the binky picture too! He looks so much better then last week's pics when he had the fever. - Steph Miles and family

Charlie Cooper said...

The rehab team has talked about two because he has no response on the hearing tests so he have nothing to loose. I'm not sure what the ENT surgeons and audiologist think. I guess we will find out on the 25th

Roxey said...

Prayers for some guidance sounds like a good idea. I hope the swallow test goes ok. Love you guys.

whitney said...

Those pictures look really great. I love all the faces of Coop. The binky thing is a big deal, I think. Good luck with all the decisions, we are praying for all of you.