Thursday, January 17, 2013

And we wait.....

Well as most of you know...waiting is not my forte. I get something in my mind and I have to have it done now, like right now. I don't have a lot of patience and I am very fast to do things (well except my laundry). I guess now is as great of a time as ever to learn how to WAIT...

Yesterday we drove 2 hours to go to Riley Children's Hospital in Indianapolis to meet Dr. Yates who is one of the two cochlear implant surgeons at their ENT center. I will have to say that I was very impressed with Riley's hospital and IU Health in general. Everyone made me feel so welcomed and Riley Mae was a big hit..duh!?

You may know from talking to me or from my past posts that I was a little nervous about going to Riley because I heard that they do not do implants before 12 months since it is not FDA approved. I was in the process of calling Chicago Children's Hospital and really just thought going to Indy was a formality. I had to do it because it was in Indiana and I would probably look like a full if I didn't.

DON'T BELIEVE WHAT YOU HEAR! I think that phrase is one of those...."things you learn in kindergarden" that you should live by but never really do, like sharing, or talking to strangers. Anyways, Dr. Yates was awesome and I think he was almost affended that we thought he didn't do them earlier. My lovely husband, if any one knows him they know that he is blunt and doesn't always sugercoat things, just came out and said "I heard you had to be part of a research project to get the implants done ealier that 12 months?" That was like 5 minutes after we got there, yea, good way to break the ice.

The Doc knows the benefits of having them done as early as possible. The earlier she hears, the better chance of her being mainstreamed and hearing with her peers by age 4. He has also been doing tons of research on early implantation and has protested to the FDA to have them done earlier...YUP, that's our Doc.

So here goes...At 6 months of age we go for a full evaluation. This includes orientation, CT scan, MRI, genetic testing, picking a device and meeting the whole implant team. This is a two day event which I am looking forward to because we will stay down there and hang out in the big city! woop woop.

During that time we will also have to schedule the surgery date. He is hoping to have them done (or at least one) between 9 and 11 months. Most of it depends on insurance and since it is not FDA approved it is going to be a fight. Each ear is about $60,000 so it is a fight we are willing to put our dukes up for. Doc said he will deal with the insurance companies so that is not a stress on us. We have enough going on already...amen to that!

We still have a lot to decide: Do we want to do bilateral at one time? What device do we want? What company do we go with? ahhhhhhhhhhhhhhhhhh so much to think about and these are the kinds of decisions that change a childs life. I guess that's what parenting is....right?

So that brings me to my first thing.....AND NOW WE WAIT. We wait a couple months and go through this hearing aid trial and just LOVE LOVE LOVE on this little girl. How could you not with those cheeks:)


Have a great day!

Riley's Mama

No comments:

Post a Comment