The Peanut Gallery

Wednesday, November 18, 2009

New Found Freedom

Wednesday, November 18, 2009
I first would like to extend a huge debt of gratitude (Thank You) to everybody that was involved in last weeks fundraiser for Kennedy. Whether it was a donation of food, time, money, supplies, equipment was greatly appreciated. Your support means so much to Brian and I. We feel so very lucky to be surrounded by so many amazing people!

We did not raise as much money as anticipated/expected, however, every little bit counts. With the money we raised I went down and purchased a transport vest so that Brian and I can now travel with Kennedy laying down in the backseat - yep, you heard me right. We can now drive Kennedy around while she lies comfortably in the backseat.

As I have talked a lot about in the last couple months, we have been unable to drive anywhere in the car by ourselves with Kennedy. If a trip with her was necessary, we both had to be in the car with her as we travelled. One of us was driving and the other person was in the backseat managing her secretions. Kennedy was miserable the entire time we were in the car. She would gag, throw up, choke, have difficulties breathing etc......It has been a rough couple months. I was feeling very seculded from the outside world and begining to feel down. I mean I couldn't do simple things like; run to the grocery store, go out with friends for lunch or dinner, enjoy an evening out as a family of three.

Well the problem appears to be two fold: (1) Kennedy has been having a lot of issues gagging and chocking on her secretions. They tend to overwhelm her and she becomes very uncoordinated and unable to handle them if she is in any position that requires her to swallow them. (2) Kennedy is unable to sit in a upright position. We have been given no explanation (par with the course), however, I feel that when she sits up it compress' her stomach and because she is extremely hypotonic she is unable to keep the flap from her stomach to her esophagus closed, thus resulting in her throwing up from the pressure.

It appears that we have reached a solution. On Monday I purchased this amazing piece of equipment that allows Kennedy to lay down in the backseat while she travels. I tried it out for the first time on Tuesday and it worked like a charm. No throwing up, no choking, no stressed out mommy, no paniced Kennedy........Freedom at last.


Derek said...

That's Fantastic

Brindle said...

yayyyy.thats we can see you guys more....sophie wants to see kennedy :)

Brandon said...

That is awesome! We're glad the fundraiser was able to help with SOMETHING!
I know you feel so helpless, those of us on the outside looking in want so desperately to help in some way, but there is so little we can do.
But we pray and wait for the Lord to give us something to help ease your burdens.