Friday, January 22, 2010

Knockin' on wood...

OK, I am knocking on wood, as I write this post. Believe me, it is nothing short of amazing! For the last few months, Faith has showed a dramatic interest in F-O-O-D! A four letter word, in our house... Many of you know this phenomenon all too well, kids with CP and food often do not go well, together. Faith struggled from day one, she never cried for food, never wanted it and would fall asleep just to avoid it. We would spend hours and hours and hours trying to keep weight on her. For the first year of life, feeding could take up to 8 hours a day! It was awful! So when she turned one, we opted for a g tube.

In 2007, Faith and I spent 8 weeks in Atlanta at the Marcus Institute's inpatient feeding program. She had just turned 3 when we went. She and I lived down there by ourselves and BOY was it hard! I hated every minute of it... They mostly work with autistic kids and their program is largely ABA techniques. She did not do very well, to say the least. They were never able to teach her how to swallow. We measuring food, vomit and drool 6 times a day, as they fed her. Food intake was in MINUTE amounts and most everything came back up. We had HOURS of training on all kinds of techniques for feeding, including Vital Stim to stimulate swallowing, all to no avail.

When we returned, Carl and I pretty much gave up on feeding her. It was so stressful and terrible for everyone.

Now she has had three years to recover and develop and she has made this amazing step. I am afraid to even think it could be true! After all, she has had a g tube for five years now. But she IS swallowing some food...I watched her closely tonight, she had about a tablespoon of potato and she didn't drool anything out. Her shirt was dry! She kept begging for more! Not getting my hopes up too much, but maybe one day......

8 comments:

The Henrys said...

Yeah!! Hopefully she will continue the good work.

Katy said...

Do you read Ryn Tales? Kathryn's daughter has been having similar successes. I think that when they get older and more aware that can help. Charlie is very aware of the social aspects of eating and I think that helps keep him motivated.

Jen said...

Oh I hope hope hope this is the beginning of food for you. My 2 year old has autism and just won't eat so I know how all consuming the worry becomes. Please, let us know how Faith progresses and any tips you have:) Well done Faith:) Jen.

Candace said...

Yes, Katy, I do follow Kathryn's blog. And it is so inspirational~! I would be afraid to even wish for that much success!

Janet said...

Awesome! She seemed to really enjoy the potatoes. Such a cutie pie! mmmm pie. Maybe you could try that next. ;)

therextras said...

Not believing you are not hoping, Candace. ;) Looks like reason to hope to me.

Barbara

April said...

Oh that's wonderful! Every step is cause for a celebration!!

Mo said...

Oh, how awesome. It just goes to show that these kids will do whatever, whenever they are ready! Way to go, Faith!