10.27.10

Hello all! We are doing well. Evy hasn't been nauseous in a couple of days, so that is wonderful. In addition to tube feedings, we have been working to get Evy to eat more food by mouth. She is so sweet. We told her that Dr. Horn wants her to eat more so that she can get her tubie out forever. So she does her best and when she actually gets food in her stomach she yells, "tummy!" and slaps me five. Every time. So cute! She takes very small bites and doesn't remember how to swallow larger amounts of food. She spits a lot of things out and claims that they are hot. I have to remind myself that her mouth tastes awful from chemo, so a lot of food might not taste good. She still loves smoothies, so today she and Stella shared three. Tomorrow her Speech therapist is coming and I will get some pointers about how to get her to use her molars more and swallow.

Dr. Horn is hoping that her tubie can come out about two weeks after treatment ends. Wouldn't that just be lovely? We are all so excited.

The other morning when Evy had just woken up and I was changing her diaper she stretched both arms above her head. It was the first time her right hand had gone over her head in a year. She and I both realized what she had done and did a little happy dance over it. She can't do it standing up yet since her scapula isn't supported that way. Her OT thinks that this is fabulous, fabulous, fabulous.

Her counts are just about bottoming out so we are doing the "please, no fevers" finger cross. We do have a Halloween party/Blood transfusion scheduled for Friday at the Clinic. Nothing like a bunch of kids in a room around Evy when she has no immune system to make my blood pressure rise. But seeing the girls in their costumes will balance that out a bit. Can't wait.

That's about it. Is that seriously week 50 I see peeking at me from around the corner? This is unreal.

If you haven't heard about the fundraiser for us on November 7, check out the sidebar. We are really looking forward to it! Our friend is raising money for our trip to Alabama in March for Constraint Induced Therapy. We could basically buy a mini-van with the money it costs for three weeks of OT. And we may have to go more than once over the next several years. But who can put a price on being able to use your hand? Nothing but the best for this baby girl. (-;