Thursday, May 13, 2010

Update on Vital Stim

We have been doing SK's Vital Stim therapy for about 4 or 5 weeks now. We had to take a short break while she was in and out of the hospital a few weeks ago but we have been steadily back at it ever since we were discharged. This is the therapy that is working on getting her to swallow more effectively. We were told over a year ago that SK was not to have any food by mouth b/c she was aspirating it.

Well, last Friday SK had her first bite of applesauce in well over a year and she has continued to have bites of applesauce at each vital stim therapy session ever since. It's huge that she still even knows how to attempt to swallow, but she does. I am so proud of my little munchkin, she is doing so well.

Right now they are not letting me feed her anything at home b/c she is still at huge risk for aspiration unless she is on the vital stim electrical stimulation machine. From what I am understanding about this...the vital stim machine can't make her swallow but it makes her feel like she wants to swallow...the rest is up to her.

It amazes me how emotional all this is...I had really convinced myself that it was "ok" that she was 100% gtube fed. It was "fine with me" that she didn't take anything by mouth. I didn't even realize until we started this that I had adopted this way of thinking. I did it to protect myself and to make myself "ok" with everything that was going on. It's an emotional thing to watch your baby take bites and swallow again and let all that hope back in again. I have said it before, this is a roller coaster ride that we are on with our girl.

I want to go to the grocery store and buy her baby food. I want to puree her food in my mini food processor. I want her to be an active participant in dinner time with us. Sure, she sits around the dinner table in the evenings and takes in all the conversation and activity but I want her to be a participant, you know? I want to spend that time with her feeding her with food on a spoon not "hooking" her up to her feeding pump. It's scary letting all these words back into my thoughts, hoping and wondering again.

I don't know where any of this is going to go, it's way too early for anyone to make any predictions. We only have 2 weeks left until school gets out which means that vital stim therapy will be over for the summer. There is no way I can get her downtown to Children's Hospital 3 days a week with the boys out of school. Hopefully I will be able to feed her a little bit over the summer so that she can maintain the small progress she has made...she has worked so hard for it, I don't want her to lose it. She's off to a good start for now.

On a different note, SK got a haircut last week. Yes, I have become obsessed with her hair. Just wanted to share some pics of the cutest bob on the block.

In the grand scheme of life and the short time we all have here on earth, I know that her eating orally is really not the end of the world. That I have her with me at all is truly a miracle and I don't want to lose that perspective. There was a time that I never thought I would see her there is no telling what her Creator and her are capable of.

Thanks for checking in on us.

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