Thursday, December 4, 2008

December is already here?!?!

I can't believe how busy we have been lately! Between therapy and appointments and PTO stuff at school, I am exhausted. I can't wait for Winter Break! :)

We think we have come to a happy solution in regards to Peanut's formula issues. The soy protein we tried was a flop. She spent the nights screaming, retching and throwing up. No fun! I finally found a protein that is soy AND dairy free, at Mother's Market,. It's brown rice protein powder. The only problem is that it doesn't dissolve into her formula, so it won't run through the feeding pump.

She gets a bolus of pedialyte at 7am, 10am, and 1pm. I now add half the daily protein powder to the morning and afternoon boluses. If I shake it up good and pour it right in, it goes through the g-tube. It just doesn't like the feeding pump! So she is getting her protein again, but with no retching or screaming fits. YAY!

I am still waiting for the metabolic and GI dieticians to come up with a blenderized diet option for us. They are still trying to figure it out. It's going to be hard, given that Peanut doesn't tolerate soy or dairy. Also, her metabolic disorder requires her diet to be low low low in fat, and high in protein. I guess it's a bit tricky to figure out what exactly we could blenderize for her, in place of formula.

For now I'm just glad we're not screaming all night, every night. She still wakes up at least once a night, and usually twice. But she goes back to sleep after a little snuggle and her Wiggles DVD on. :)

We have Winter Festival at Monkey's school tomorrow night. I was on the committee for this, so I am anxious for it go well. It's going to be a long and late night though, so good thing we have a nurse for Peanut! The school is right across the street from our house, so she can walk home with Peanut when she's done.

I better get going, I have a million things to do still for Winter Festival. It's almost 10pm and I am exhausted already!

3 comments:

The VW's said...

I'm glad to hear that some of the feeding issues are going better! Have fun at the Winter festival! :)

Jessica mommy to Alex/ RTS said...

Yay to solving feeding issues. This, is the hardest part of all this for me. Development all that, I can go with the flow, but these feeding issues stink!

Tamara said...

Hey, there girl! Looks like some good news! Thats wonderful! Hope your time at the winter festival goes good! I love seeing your peanut walking! Wow what a blessing! Thinking of you!