4th Birthday Photo Session

4th Birthday Photo Session

Monday, February 28, 2011

A Breakthrough?

Yesterday, Andi spent the day with her Grandma and one of her aunts, while Daddy Bean and I went for a day of skiing -- our first full day off together.  While skiing wasn't a great idea for our colds, it was really good for all of us. One reason we don't get a lot of time-off is because of Andi's g-tube feeds.  Most people aren't comfortable with attaching/detaching the Mic-Key, or programming the pump, or dealing with the glorious stench of leaking Alimentum.  Because of this, it's quite an undertaking for anyone to watch her.  So, yesterday, we figured we'd just ask Grandma to work on her oral feeds, and not deal with feeding through the g-tube.  So, Andi went without her four daytime bolus feeds, and instead, plowed through almost of three containers of food we brought:  pears, green beans and bananas.  Apparently, she puked some bananas, but when we got home that evening, we promptly got out another container of food, and she plowed through most of it!  So, in the course of the day, she ate almost four containers of food.  Probably not enough calories, but... that's HUGE!  It just goes to show that the g-tube is preventing hunger, preventing the natural instinct to feed. Although it does have it's purpose, the g-tube is probably holding Andi back.

I've emailed Andi's pediatrician this update, and we have a late day appointment with him to check her weight.  This is to help us determine if the Reglan is useful or not.

We went out and bought Andi an actual high chair.  Our plan is to start creating the traditional dinnertime ritual, and other meals.  One thing I saw online, was letting the kids experience the food:  play with it, feel it, smell it... so we're going to try to start incorporating all that into her daily food experience.  All in attempt to help entice even more of a breakthrough.


  1. Fingers crossed as usual! That is awesome that she felt hungry and ate so much!! Throw that ol' "don't play with your food" rule out the window and have fun! :)

  2. Hi, my name is Amy and my son Mason was born 1/6/11 and just diagnosed with CHARGE at 3 weeks old. Mason just got his gtube and isn't able to swallow yet so we wont be pursuing the oral feeds for a while but I am already look to the future and hope to start oral feeds as soon as he is ready. I'm interested in following Andi's progress and what you try etc.
    I was doing some research and found a site and wanted to just share it with you just in case you hadn't seen it. http://tubefedkids.ning.com/
    Just love the new pics of Andi!