Wednesday, August 12, 2009

So much therapy... little time. Harlie has had FIVE therapy sessions in the last three days! I don't know who's more tired - me or her!

But we had a good feeding therapy session today. She ate a total of 3 ounces! And she's been pretty consistent with being able to eat about that much for each session. So...we were able to make a nutrition appointment to get a clear plan to start to take away some volume from her tube feedings since she's getting more volume from her oral feedings. We will see the nutritionist the first week of September. I suppose we'll get some sort of plan to feed her three meals (start with oral and then finish up via the tube) and two snacks (maybe just formula with the squirt bottle).

While I'm excited with the progess, I'm nervous, too. This new plan will be a huge time committment. And as it is now, my days are so crazy, I am lucky to get in 2 or 3 oral feeding sessions per day. And that's with Brandy's help. As much as I hate the fact that my daughter hasn't been able to eat by mouth - tube feedings are a lot "easier" than feeding sessions. Her feeding sessions take a lot of time, patience, the right atmosphere, tools, etc. There's the pureeing, weighing, motivating, feeding, praising, dealing with behavior issues, and then the cleaning up. Because right now, I'm making a huge mess pureeing her foods. Bonus.

What an emotional roller coaster this whole eating thing is. I remember the first time I truly saw her swallow food. What an amazing feeling. Happiness on a level I simply can't explain. And while I am still THRILLED - I know that the work has just begun. Almost three years into feeding therapy. And the work has just begun. Holy crap. There are still so many hurdles ahead of us. I don't even want to think about chewing. How are we going to teach her to chew? And when? Will she stay on pureed foods for months? Years? Okay. I need to take a step back and not think like that. That's way too overwhelming.

One day at a time, they say.

Tomorrow - no therapies. No appointments (except for Murphy's last day of swimming lessons). Wow. I'm really looking forward to it.


Donna said...

Ok, so you and I are going to write a book chronicling the joys of going from tube feedings to pureed foods (and someday we will both be able to write a chapter about chewing!) and then we will include recipies. How I wish there was a book like that out there for me to read! Whadda ya say? Then we'll take the proceeds from the book and go on a much NEEDED vacation where the only thing going into a blender will be the rum for our frozen drinks!!

Grandma said...

I like Donna's ideas for the both of you..a caribean cruise, coctails and rest and relaxation!