One Week Down, Two to Go!

I had planned on blogging about Alex's first week of intensive before today, but Zach threw a little kink in my plans and has wound up with strep...AGAIN!

Overall, Alex is doing GREAT at therapy. I am SO proud of her and how hard she is working. We're still having a lot of trouble getting her to bear any weight through her arms, but her stamina this time around is completely stronger. I remember her first round of intensive therapy she barely made it through a two hour session and now she's getting through three hours with with flying colors. I got to spend most of the day at therapy with her on Friday and she and Shannon get a lot accomplished.

She works on her walking...

She rides her bike...

She works on tall kneeling...

She works on side sitting...

And I had to take a picture of her during stretches - you would NEVER know she has low trunk tone...she can hold herself in a half sit position for literally minutes...talk about abs of steal. It baffles me how she can do that, have such defined muscle in her trunk, but have absolutely no sense of awareness of it when it comes time to stand, sit, etc.

She also does a wide range of exercises in the 'cage', but I had to run up to her school because she is missing 15 consecutive days of school they are un-enrolling her from the school...long story, but I didn't get any pictures of her cage exercises. You can kind of see her new haircut in these pictures too. She was getting so upset every time her hair needed to be put in a ponytail that I just decided to chop it all off...she looks so much more grown up with her hair in a bob.

On to my most exciting news of all...we went to the feeding clinic on Friday and Alex gained 15 ounces. Not that impressive, but with all of her exercises and just now getting consistent with almost every feeding by mouth, it's a start - and she didn't loose so that's a positive in itself. I don't have a picture of it, but in feeding therapy we are working on Alex drinking from a squeeze bottle. We're using it with every meal she eats too so we basically squeeze a honey thickened juice or water into her mouth and verbally prompt her to swallow. At this point, we jut want her to realize she has liquid in her mouth and to swallow it, not actually suck in up through the straw herself. When we met with the nutritionist, I was floored by what she said...she said that if Alex starts actually drinking from the squeeze bottle, consistently, that she will be weaned from her last two feeding tube feeds and those will be replaced by pediasure in the squeeze bottle. If she consistently does that, and gains weight, she could potentially have her feeding tube removed in a year or two....HOLY COW!!!!!!!!!!!!!!!!!!!!!!! I NEVER, EVER thought I would hear those words!!!! I clearly remember a nurse telling me how one of her patients that was thirteen had just had his tube removed and I remember thinking, how lucky for him, we'll never get there...and now we just MIGHT!!!!!! It is truly amazing how one person can change your complete mood and make you feel so elated with just one sentence!