Cochlear Implant candidacy and more.....

We went to Salt Lake to see the cochlear implant surgeon and to get the final decision if Laynie can get a cochlear implant or not. We also saw the endocrinologist. The endocrone appointment went really well and while we were there the doctor told us that the patient he saw right before us also has CHARGE syndrome and he asked us if we wanted to meet. I was so excited to meet my first family that also deals with CHARGE syndrome. I was so excited when he asked me I almost started to cry. It is so crazy, because this mom is someone that can totally understand my life and emotions. It is such an immediate bond!!! We talked for awhile and shared information. It really made my day. There aren't very many people with CHARGE syndrome and nobody usually even knows what it is, so it was so nice of that doctor to let us meet:) There is a CHARGE conference every other year and we are hoping we can make it this summer in Arizona. We would be able to meet a lot of others with CHARGE syndrome at the conference.

Here are our new friends...

The big decision is finally in.................... Laynie is a candidate for the cochlear implant!!!!! It makes me very happy, but still nervous about the surgery. He said the anatomy of her inner ears are so different than the normal ear, and it makes her much more difficult to implant. Her cochlea is smaller than normal so he might not be able to get as many electrodes in there as he would like. The more electrodes, the better the results. He won't know until he gets in her ear, but the outcome might not be a good as the typical patient recieving an implant. She needs to get another CT scan before the implant to check where her facial nerve is, because there is a high risk of damaging it. He wants to do the surgery asap because of her age and speech development. I just wanted to wait until after Christmas, so it is scheduled for the first week in January. It is scary that it is so close!!! It is amazing what doctors and technology can do. Also, he mentioned that her semi-circular canals are missing in both ears. Those control balance. I was wondering if they were missing, because it is common in CHARGE, but I was never told they were missing. I am glad someone finally told me. Now I know why she falls constantly!!!!! I am glad we finally know the decision and have the answers we have been waiting for!