Thursday, March 19, 2009

Pre-Implant Therapy has begun

So we are back from our first week of Pre-Implant Therapy. I spent the week studying the ear and rattled off how the ear works when we include the names of the bones that conduct sound as it passes through to the cochlea.....blah, blah, blah. Anything to get on with this process! We covered the ear, the types of hearing aids and implants, the types of communication, different kinds of hearing loss...audiograms.., what the parents roles are for therapy...standard stuff. I knew about 95% of what she told me and picked up some new information as well which I found really interesting. If you have never studied what the ear/ brain does to understand sounds and speech you should check it out. IT is really amazing and something I know that I take for granted.

It looks like the hold up on our end will be Insurance approval which can take up to 30 days... I will start calling them as soon as they submit the paperwork. My plan is to become Tim Robbins from Shawshank Redemption and call them constantly until they move us along. If everything goes as planned we could have at least one ear done by July and hopefully both.

We will be heading back next week for more parent education. I do love her therapist. Molly is in good hands. As soon as I graduate from Cochlear Implant Therapy class we will be heading back into therapy with her original local therapist who is also really good...and we will stay with her until they force us back to Birmingham.

Wednesday, March 11, 2009

Day Two - Speech Eval in Birminham.

Well, what a crazy day. I had to get all the kids up, fed, dressed and out the door by 6:45 so that I could jump on the road to Birmingham by 9am. Those who have ever seen Jack, my five year old, in the morning know that is is not an easy task. However, we managed to get it done and I arrived for our speech evaluation 5 minutes before our appointment. I wont even mention the number of laws I broke in order to get there on time.

The speech eval was mostly questions about her development in all areas...speech included. Both Speech Therapists thought that Molly was exceptionally bright and cognitively right on track. Any delays she had in other areas were solely due to her not being able to hear. They hold out great hope for what the implant will do for her and while they cant assure me of the level of success she will have, they feel that shooting for mainstream kindergarten is not something that is too far fetched.

So we left knowing that the next step was a few months ( three to four ) of pre implant therapy. That means we have to agree to bring Molly to Birmingham once a week until the parents know everything that the therapists and doctors want them to know. This process usually takes three or four months. However, due to the number of hurdles and struggles we faced in trying to get her in and tested I had already studied the different types of hearing loss, am well versed in reading an audiogram... ( at least good enough for someone who isnt a speech therapist or audiologist), know the type of hearing loss Molly has and how to describe how a person hears complete with drawing a diagram of the outer, middle and inner ear. I guess I figure if I had to know enough to do eye surgery in order to fly nights in flight school I may as well become an expert on the anatomy and function of the ear. All of this information is what they are looking for the parents to know prior to surgery and I think I proved that today. I've also reasearched the two different types of implants that Childrens South offers and what makes an implant different than a hearing aide. So after throwing all of that out there, the therapist I spoke to said that she thought I would probably be able to go through their checklist in 6 weeks. I am determined to do it faster than that!

Once I got home, the therapist called to let me know that all the slots for therapists were full and that they thought that based on the information I already had that I would be able to wrap up pre implant therapy in about three weeks. So we went from three to four months to three weeks and I couldn't be happier. Finally the system is working for us...not against us. Im thrilled. But I will be studying like crazy for the next three weeks in order to learn and commit to memory everything I need to know in order to speed this process along. Once the therapy is complete, we will get a CT scan of Molly's ears, and then meet with the Doctor doing the surgery. We are attempting to get the insurance to approve a bilateral implantation... basically meaning an implant on both sides. Because our doctor doesn't like doing both at the same time, we will have to actually have TWO surgeries to get this done.

Im hoping that we will spend the next month in pre- implant therapy, than another two or three weeks getting CT scans and meeting with the doctor, than another two or three weeks for the insurance three months before her first surgery. In the meantime we will travel to Birmingham for therapy and continue our therapy here with our local AV therapist as well. If things go as planned, Molly should have both implants in, turned on, and mapped before school starts in August!

Our first therapy session is next Thursday. Here we go! Another step closer to the Implant process.

Tuesday, March 10, 2009

Not just power aids...super power aids.. back from our first trip to Birmingham this week. Unfortunately, we are headed back tomorrow for the speech eval. I was hoping that we could take care of the speech eval over the phone. Molly knows several words....but can only really say three or four...why drive all the way to Birmingham for that? But alas, we are headed back.

But first, our appointment today. They put her back in the booth and her results were very consistent with the results from her last unaided fact they were 5 to 10 db worse. Honestly, if aided results are not where she needs to be to get her the best possible hearing, Im all for her having some bad results if that means it will help her qualify for the implant. What the audiologist determined was that her hearing was severe to profound and that she needed new hearing aids. The ones she has had all this time, even cranked up, were not going to help her so they told me that she needed "super power hearing aids". The aids she had were just "power aids". Tim the tool man would be proud. I actually put one up to my ear and WOOOOZZZIE.... it is LOUD! Much louder than her last set. Goodness! Have I noticed a difference yet...not yet...but she is so smart and so able to communicate with out her hearing, that Im not really sure she realizes that she can hear a bit better.

The next test was the aided exam and what this showed us was that it did improve her results but not enough to where we would be comfortable with her living day to day. The best we could hope for her aided was one or two word sentences and a dependency on sign and reading lips. We aim to shoot a little higher for our girl. If you know anything about the speech banana ( and some of you reading this will). She registered at the bottom of the speech banana at all frequencies except the higher frequencies which didn't register AT ALL! So words like hat, pat, sat...would all sound the same to her unless she was reading lips.

That pretty much settles it for us then...on to the Implant process. We will start our speech appointments tomorrow and they will continue weekly up to a year. After we understand all they want us to know about the implant process, we will be scheduled for a CT scan where they will take a look at her ears to make sure she can even hold an implant. Every thing we have seen from her so far looks good so Im really not concerned with this part of the process. Then we meet with the doctor and schedule the surgery. We are looking at bilateral implants which means the doctor will implant one and then a few weeks later, implant the other. After a few weeks pass and the swelling goes down, they will turn the implants on and then the mapping process takes place. This takes weeks and weeks and will continue until they feel they have all the levels set appropriately for each frequency. All this time we will be having weekly speech sessions that I hope to have moved back to Huntsville by this time... but we really have to take this one step at a time. This is the beginning of a very, very, very long road. Step one was today...step two ...tomrrow...ugh.