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Thursday, June 17, 2010

Occupational Therapy

I shared her food journal. She's not concerned about her output as much as the nurtition going in. She is referring us to a Nutritionist. We will see them in 2 weeks.

She is concerned that on "good days" she still isn't getting enough calories. And on "bad days" she's getting next to no calories. She suggested that we try Pediasure just to get nutrition in. She thinks that we are in a vicious cycle of oxigenation, nutrition, mobility.

She brought up that she didn't think an NG would be a very good option for Delaney because she would constantly rip it out so instead of fighting her to eat we'd be fighting her to eat and fighting her to keep the tube in. She said that she thinks a GT would allow us all to have a more "normal" life. She thinks it would be temporary because we could reteach her stomach what "full" feels like while feeding her by mouth so she starts to get the connection of what she should feel like after eating. She thinks by reteaching her body the correct signals it will help her brain do it correctly by itself without the tube.

It's a lot to digest because even just a few weeks ago I was in tears at the mere mention of a tube being placed in my daughter. Now I just want us all to have a more normal life. Our life right now is focused on how to keep Delaney in her little bubble (our living room) so that she's more likely to eat and drink and stay healthy. I want to be able to go other places without fear that she's not going to eat, drink, or she's going to catch something that lands us back in the hospital.

1 comment:

K J and the kids said...

I understand, of course on a WHOLE other level than what you are faced with...but it's so hard to get them to eat and then to get them to eat something that has nutritional value. UGH.

What about a vitamin drop. That you can add to her drink she's willing to take now.

I'm so sorry. I hope and pray that she doesn't get an NG. They are so invasive and terrible.