Thursday, February 19, 2009

Hearing update

Wow...well, it is official. I suck at the blogging thing. It has been over a month and if you are a follower of this blog, well Im sure you have moved on by now. Sorry...but this is one overwhelmed mother of three and because the blog cant sit around and whine for chocolate milk or ding dongs for breakfast, the blog gets ignored. Its a people's choice award really...and the blog loses...every time.

So we finally...three months after getting Molly home have an idea...a good idea of where her hearing is...or her non hearing more like it. After three months, phone calls, waiting, etc we know how bad her hearing is. Molly is deaf. Not just a little hard of hearing ( which frankly I had thought that maybe she was) but full on, full tilt, severely deaf. We had an INCREDIBLE experience with two fantastic audiologists who felt very good about Molly's reactions to the hearing test and think that Molly is about an 95db in the right ear and 85 in the left. What that means is that a sound has to be at least 85-95 db for Molly to hear it. While that may sound loud, it really isnt THAT loud per se. A whisper in a library is about 30db and a normal conversation is about 60db. That is of course, unaided. We would have checked for aided hearing, except the genius in Birmingham who did the first eval set her aids way to low for her so it wouldnt do us any good until we get them reset. I was very nervous as she was tested... I became a stage mom almost willing Molly to hear that beeping sound that was so easy for me to hear. Come on! Come on! Point to the mechanical duck! It was the ACT all over again!

So what does that mean for her future. It means that we will begin the looooong, arduous process for Cochlear Implants. There are many evaluations left to do and it also means that I will be burning up the roads to Birmingham once a week for tests and evaluations...but we do believe that this will give Molly the best possible future and so away we go.

It is kind of bitter sweet actually...the deafness. We are thrilled to finally have the answers to some of our questions...but wouldnt have minded if the audiologist had said.. Oh wait...I have seen this deafness before, here...give her this pill and she will have completely normal hearing in just 10-12 minutes." And am I thrilled about returning to Birmingham...NO...but we will do what we need to do.

As far as the type of hearing loss she was diagnosed with - it is sensori-neural hearing loss. Meaning that the tiny little hairs in the Cochlear of the ear either do not exist, are somewhat missing, or just flat out dont work. Bummer that they cant fix that...but the implant will help. Where is the hair club for men when we need them? We dont know what kind of lifestyle Molly will enjoy with the implant nor do we really grasp the amount of work it will take to catch her up on her language deficit...but she is soooo smart...all things look good for her.

Well, it is time to shower and head off to Audio/verbal therapy. I am in a hockey induced fog this morning and have got to clean my house before Child Protective Services takes all three kids away...not that I wouldnt enjoy the break!


Patientlywaiting said...

Well, I am glad that you have finally gotten some answers. Our daughter's have the exact same type of hearing loss with about the same hearing decibel level. We had genetic testing done and Claire has a mutation on the Connexin 26 gene which is the most common cause of hearing loss. We have been home with her for almost 7 months and she is scheduled for a cochlear implant on Monday.

Are you still working on sign language? We are taking a class once a week and coming along slowly. Claire has mastered almost 170 signs. We plan to continue sign language as long as she needs it.

Thanks for the update. I was getting ready to send you an email to see if you had found out anything. I understand about the lack of time for blogging. Thank goodness for naptime!


Tricia said...

I am so glad you posted an update about Molly! I was thinking about you yesterday when Sophia went for her hearing test post op visit for tubes). She screamed through the whole test. They know the tubes are working and she hears voices normally, but they couldnt' test for pitch. We go back in May for our palate team appointments so they will try again. I am glad Molly is doing well.
(I e-mailed you from China about Molly not wanting to be with you husband. We had the same thing with Sophia)

Angie said...

I love your updates but understand how busy you are. I would LOVE to see some pictures though!