Thursday night I hit my bottom. I was so angry with the doctors that we visited. Each and every one of them kept telling us what we already knew. Each doctor kept telling us to go see the next doctor. All I knew with certainty is that 70% of your speech is gained by the time you are 3. Annie turns 3 in less than a month and only has the speech of a 5 – 6 month old. One of the biggest hindrances to her speech currently is that she can’t hear. My perception was that no one was helping my baby. Everyone wanted to tell me what was wrong with her but no one was helping her. By the time Friday morning rolled around I was ready to take no prisoners. I was going to walk into that ENT’s office and demand that they give my daughter Bahas and help her hear. Thankful that is not what happened.
On Friday we met with Dr. Young at Ch*ldren’s Memor*al Hospital. I asked within my first 5 minutes of being there if we would get some answers and some action taken on her hearing. The doctor said if I had a hearing test scheduled that is what would happen. I explained to her that I wanted to do that but they would not schedule a hearing test until I saw her. While I was seeing red she left the office and came back to tell me if I was willing to wait they could test Annie’s hearing today and see what was going on. It was determined that Annie has no eardrums but fully intact inner ears. An Audiologist preformed an exam the results that came back are that she has “Maximum Conductive Hearing Loss”. The Audiologist was amazed at how well she was hearing for someone with this type of hearing loss. The pitched where she scored the highest meaning she could hear the most were those of human voices. That explains why she was/is able to respond our voice commands.
We left on Friday with a loaner Baha Softband. I was in tears I was so grateful for finally having someone help Annie. The Softband is a elastic Velcro strip that goes around her head and the Baha snaps onto a little disc and rests on her scalp. It takes the sound and helps it make it to those inner ears so they can do their magic and Annie can hear.
We go to Easter Seals this week to set up our speech plan. All in all Annie is doing okay with the headband. I have noticed her babbling more and being more involved with what is going on. When she is quiet now it is with a look of wonder on her face. I made the comment to Dan that in a whole lot of ways I almost feel like Friday was a gottcha day of a whole new kinda. This time she did not lose everyone she new. This time she gained sound for everything and one that she knows! She is not thrilled with the headband and we do spend sometime after it is put on crying and being upset. Then she hears something and all the tears go away.
We have a busy week ahead of us that will end with our IFSP meeting on Friday with EI. I’ll write more after that.
5 comments:
So glad to hear that Annie has gotten help!
Best of luck to you as you navigate your way in the medical world and fight for your baby!
Sheri
If she gets tired of the stiff band the comes with the BAHA, check out www.forwerd.net for some mesh bands that are much softer. We always had a problem with some people (babysitters, school) putting the band on too tight.
Fight for the two BAHAs as it will help a bit with localization. We got one BAHA the first year Micah was home and then another a little over a year later, both through Early Intervention. Lydia
Actually, Lizzy's Bubba is in the backgorund of the first picture. It's the shiny pink thing.
I was watching that old movie SonRise and this post kind of reminds me of that, of the way all of the doctors kept saying they couldn't figure out what was wrong and there was nothing they could do, and the parents just wouldn't give up. Isn't it great that we live in times where they've invented things like this that can help Annie hear?
i totally understand how you felt, about the doctors not giving you answers. my son failed his new born hearing screening, it took two months before we could get into an ENT to get an in depth hearing test. BUT..when they did the test they said he had a moderate/severe hearing loss; he also has a malformed ear with no opening at all, and the other ear has a canal that closes itself off..so he has problems with both ears. but, the day we seeen the ENT we were able to take home a loner BAHA softband!! when they first put it on him ant turned it on...i bawled like a baby! it was a completely different child, you could just tell that things were conecting in his head, he had heard mommy's voice for the first time ever!!!! it was beyond awesome!! he just turned three months old, and i wouldnt give them back the baha if they paid me a lifetime of fortunes!!! that softband is the best thing in the whole world!! i would recommend it to anyone with a child with hearing problems..it is so worth it! i hope you have as much luck as we did with it!! i would continue to keep in touch, if your interested...im pretty new to the hearing loss community- could use someone to talk to. my e-mail is kgr6782@yahoo.com
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