Thursday, April 24, 2008

We got a response

I emailed the coordinator or the nerve rerouting surgery I mentioned in my last post. She responded a couple of times.

First, Bug has to be 6 years old before she can be accepted in the study. At first thought, that is disappointing. However, we know that God will take care of our daughter until the time comes for the surgery and cathing for a few more years is nothing, really.

The results that are starting to come in from the surgeries conducted in the US are looking really good. The children are regaining bladder AND bowel control, it appears.

As I think about the significance of this surgery a couple of things come to mind. First, I am ecstatic that Bug might be able to go to school in big girl underpants! She won't have to explain to her friends why she has to use a catheter. She won't be "different" in that sense. She won't suffer from recurrent UTI's. She won't have to take medicine to help her empty her bowel. She won't have accidents where children become so cruel and tease her. Truly her future looks very bright.

On the other hand, I don't want to forget that God has blessed her (us) in ways beyond measure already. If the surgery doesn't happen or if she is the 1 in 10 that it doesn't work for, that would be ok. God has already done miracles in Bugs life...she was never to walk and she is VERY mobile with her walker and/or her arm crutches. She was never to talk and to be honest, she never stops. So much so that it drives me bonkers sometimes. She was to be severally mentally challenged and in no way is she challenged. She learns things very quickly. She understands. She inquires about things that are far beyond her years. She astonishes me, and many others. God has been so good to us.

The coordinator also gave us a range for the price of the surgery (in the study). I was guessing it would be in or near the $100,000 mark. I mean, we are talking about moving tiny, delicate little nerves here. She responded that the surgery runs about $30,000-40,000 not including travel and hotel. That is doable! I am still trying to decide if we should start fundraising now or wait. Part of me wants to do it now because if we have the money on hand, the minute it is available, I want to have it done for Bug. Part of me wants to wait because what if, by another miracle, the insurance pays for it...then what would we do with the money? My best thought on that one is that if it were paid for, then the money could be given to another child waiting for a life changing surgery...we could do a lot with that money. Or, set up a scholarship fund for the Spina Bifida Association. There are definitely good things to spend that amount of money on.

Just thought I would share what I know thus far. Keep us in your thoughts and prayers, please.


Mindy said...

This is so exciting! Very positive news all around, I thought.

nush said...

definately keep ya's in prayer!!!

LeeJo said...

Wouldn't that be SOMETHING!

PeWee said...

So encouraging! This is all wonderful news!