Thursday, January 21, 2010

New Resolution

Rob and I have agreed to update the blog more often. It's been difficult recently to write because we see so many of our readers on a weekly basis and they already know how he's doing. Sometimes better than we do. Nevertheless, we have made a deal that when one of us does an update the other has a week in order to update again, so you should be hearing from one of us hopefully every week.

Today Charlie and I had a meeting with 2 audiologist, the cochlear implant representative and his hearing therapist. The meeting was set up several months ago to brainstorm ways to tell if an implant is working when a kid is unable to communicate. Normally with an implant the person goes back to the audiologist several times to fine tune the volume or programming so it isn't too loud and distorted or too soft to hear. Char just likes to complicate things. From testing we knew the implant was sending the signal to the auditory nerves but the test that records if the signal was reaching the brain had been negative. When that test was done I was reassured that it is negative in about 10% of people that can hear just fine but it still didn't give us what we were looking for. We didn't know if the signal was making it to the brain and if so did Char's brain even know what to do with that kind of information.
A few weeks ago, during Char's hearing therapy sessions with his Angel's we started seeing more and more responses to extremely loud sounds. At first they were very infrequent responses and hard to reproduce. He might occasionally blink or flutter his eyes when the fog horn or diesel truck horn (thanks Sammy) was blown, or perhaps stop moving his arms when the pots and pans were being banged together right by his ear, or widen his eyes when the synthesizer (thanks Troy) was played at maximum volume. Then we started to see more and more of these but only to loud sustained noises. With this new info the audiologists reprogrammed his implant. Mike the rep, turned the implant on as high as it could go and Charlie gave subtle but definite responses to nearly every test sound. He said some kids cry at this level but Char was all smiles. We were all really excited.
For the next 30 min we discussed how to keep the implant on his head now that he moves his head back and forth so much. The magnet strength was increased to the maximum with the caution to watch diligently for skin breakdown. He may be trying out quite an array of headdresses to keep it in place. Next time you see him you can comment on how good it looks and he might even hear you . :)

12 comments:

rod said...

Charlie Steps, his way and his time!!!!! We are so excited for you and for him. We love that little guy he is my hero!

Paige said...

I love the updates and I am so glad you are going to do them more often. I don't really get to hear much about his progress. I am excited that he is starting to be able to hear. That is wonderful news. Keep us posted on what is going on.

Kristin said...

I love that last line, "Next time you see him you can comment on how good it looks and he might even hear you . :)" Wouldn't that be Wonderful!

TAMARA HARRIS PHOTOGRAPHY said...

Yeah! Yeah! Yeah! That's awesome Char. You are the man, you keep my spirits up, as I am dealing with my own personal struggles. I love to be in your home and feel of the sweet spirit there. Rob and Angel you two Rock!

Tamra

TravandNat said...

I always knew he could hear! I am so, so happy that it has actually been confirmed!! Way to go, Charlie!!

linds said...

awesome. this info brings tears to my eyes. love you char.

Mills Family said...

That is so awesome and I am glad you guys are going to update more often I love reading about all the progress he is making!

Meghan said...

best news of the day. or even the whole week. i can't wait for him to hear me sing... and britt sing too. ;)

Kelly said...

thank you for updating more! i would love to be one of charlie's "angels" and maybe sometime when i am out that way i can meet him & meet you, angel. i'd love to hang out with you guys and soak up some of that goodness!

Emily B. said...

That's really exciting! Good work Char!

Anonymous said...

I LOVE the good news! Thank you for blogging. I know it takes a lot of time. I love to read about Charlie anytime. He is so special to work with! Ilove being in your home and working towards a common cause!
Connie

Ginny said...

i still remember the first time we saw what appeared to be a distinct reaction to the lids being banged together. i cried, even though I tried to hide it. i love that what we have been seeing has been scientifically confirmed.