Tuesday, November 24, 2009

February 10 -- Implants Date :)

Well, we have a date on hold for Ellie's bilateral cochlear implants. It will be February 10. Dr. Daniels does only 2 implant surgeries per month...Ellie has to be at least 12 months before she can get them. Her birthday is January 17, but both of the January dates were spoken for already. They said that if something is canceled for some reason, we will be the first one to fill in that slot. It is actually quite amazing that we are even able to get in as soon as February. Especially since she is still in the process of being evaluated right now! She had an appointment last Friday for an evaluation with the audiologists at Spectrum Health. They did a hearing test with her hearing aids on (and found basically the same thing as Jack usually finds at Shawnee Park). They also showed us the different devices that we have to choose from. Then, on Monday (yesterday), we had an evaluation appointment with a speech pathologist from Spectrum. She said that Ellie is actually doing very well with her hearing aids (not news to me.) :) She seemed quite surprised actually and was hesitant to say that she would recommend her for a cochlear implant. But then she asked me a bunch of questions and discovered that, even though Ellie is doing remarkably well for a baby with profound hearing loss, she is still only making "ah-ah-ah" sounds and she doesn't show any recognition of the meaning of words (ex: mommy, daddy, buh-bye, etc.) So in the end, she said that she thinks Ellie would do great with cochlear implants. The only thing that both people doing the evaluation said was that they might want to reassess her after she has had her hearing aids for a longer period of time. They didn't say anything for sure, and I think that Dr. Daniels will still want to do the cochlear implants as soon as possible simply because she does have a profound hearing loss and there is only so much the hearing aids will be able to do....Anyways, I hope that wasn't too confusing....

Tomorrow is our last appointment with Tim Burkhart (chiropractor)...even in the midst of all this testing and evaluating for cochlear implants, we're still praying that God might choose to heal her ears.

Thanks again for all your thoughts and prayers as we go through all this!

Friday, November 13, 2009

Appointments--Evaluation for a Cochlear Implant

We have a couple of appointments set up for Ellie to start being evaluated for a cochlear implant. The first one is next Friday (the 20th) at 8 am. I'm not exactly sure what they will be doing at this one...The second one is the following Monday (the 23rd) at 8 am. This one is for speech--they will want to know what kinds of sounds she is making, etc.

I took Ellie this past Wednesday to see a chiropractor (Tim Burkhart). She did end up needing an adjustment....her neck was a little off. This was encouraging because Tim said that the neck area can be related to ear issues. I don't want to get my hopes up, but we're definitely praying that this could maybe help improve her hearing. We will be following up with him next Wednesday and the following week as well. Since she has been adjusted, I keep on trying to see if I can get responses with lower volumes and sounds like "shhh" or "ssss"....these are sounds that we were sure she would not be able to hear. Sometimes I think she does respond, but other times (most of the time), she seems oblivious.

Anyways, that's all for now...I will keep you posted with the appointments and hearing test results!

Tuesday, November 3, 2009

New Hearing Test

Ellie had another hearing test done at Shawnee Park yesterday. This test showed improved hearing responses! Jack (the audiologist) said that he was seeing responses from Ellie without hearing aids for frequencies that he hadn't been able to get responses to before. He said it looked like she could hear at about 85 decibels (which would be a 10 dB improvement from before).

When she was wearing hearing aids, she was very vocal, so it was a bit more difficult for Jack to test her...but he said she looked like she responded to his voice around 35 dB. This is a jump up from the 45-50 dB level that he found last month. We're very excited about this improvement! On the one hand, we hope that it will continue to improve....but on the other hand, if she does continue to improve, it might take her out of candidacy for a cochlear implant when she turns 1. Jack told me yesterday that an infant with "profound" hearing loss can get an implant at 12 months, but a baby with "severe to profound" hearing loss may have to wait until they are 24 months. Right now Ellie is still in the "profound" category, but if she continues to improve with the test results, she may have to wait awhile.

So you can see, we're kind of tugged in a few different directions...We would love her hearing test results to continue to improve so that she wouldn't ever need a cochlear implant. BUT we don't want to wait a whole year if she will still need it when she's 2...that would be a lot of language development time lost. Another direction we have been exploring is stem cell treatment. A couple of weeks ago, I was just online researching different things and I came across someone's blog about stem cell treatment for hearing loss. It is still in the experimental stage, but I do think that sometime down the road, they will be able to improve hearing by using stem cells. There are no guarantees as to when this may come out, but it got us thinking about some different options. The catch is that once someone is implanted, their residual hearing would be gone, so stem cell treatment may not work. (Again, this is all online research, so I know I probably don't have all the facts straight....please, if you know anything more about this, let me know!) So we were talking about maybe implanting just 1 ear and waiting for stem cells for the other ear, but we kind of feel that we should do what is best for Ellie right now....which would be bilateral (both ears) cochlear implants. So those are the different directions we feel pulled toward...lots to think and pray about!

Ellie is a busy girl...she is pulling herself up on everything now (and getting into everything she's not supposed to!) :) She is always so happy...I couldn't have asked for a better baby! Here are some new pictures!
She like to crawl through tiny spaces!

Halloween Costume--Go Michigan!

Ellie's cousin, Jada