I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, April 9, 2009

On Cloud Nine!

Before Alex's GI Dr. appointment today we had a follow-up nutrition appointment at Children's Hospital. Six years ago when Alex literally forgot how to eat and she was hospitalized, I remember the doctors coming in to talk about her needing a feeding tube. In my mind I thought ok, no big deal, she'll get this tube thingie, we'll take the pressure off her by not shoving a bottle in her face every two seconds and in a week or two we'll be back on track and good to go. I couldn't have been more off base. We have worked so hard over the past six years to get her to eat again, therapy after therapy, trial after trial. She was released from the feeding program at Children's Hospital on two separate occasions because she was a failure to progress. The therapists didn't think she could do it and it really seemed like no matter how hard we were trying it was all futile attempts - no matter how much I willed it, she just couldn't do it. But we never gave up trying. I suppose I'm a tad emotional, but I'm tearing up as I type that today I got the news I have waited so long to hear. Alex has gotten back on track with her weight and is back in the 25th percentile and is eating her blenderized food so well, that we are starting the process of weaning her off her feeding pump!!!!!!!!!! In just 12 days Alex will have all of her meals during the day by mouth!! She will only have to be hooked up to the feeding pump throughout the night to make up calories she didn't get throughout the day. It still doesn't feel real. You may think I'm overreacting, but this is a huge, huge milestone for her and I am so happy for her.

On to her GI appointment - the short version is they are going to schedule her for an endoscopy to see if they can find the source of the bleeding. It's an outpatient procedure and she will be completely under sedation. Hopefully it's going to be scheduled the beginning of next week so we can get that behind us and focus on her new diet! :)

2 comments:

stephanie said...

i know you are dancing on cloud nine!!! what wonderful news donna -way to go alex! and a huge pat on the back to you momma (and daddy too!) for getting her here. love, stephanie

Anonymous said...

WOW!!! Congrats to all ~ esp. Alex who has worked so hard. And to mom and dad who give her such yummy foods. All my love, hope and prayers for continued success! Ellen