Monday, September 14, 2009

Lots of therapy and lots of seizures (increase Banzel)

Reagan did finally go to sleep last night and stay that's always a good thing. Today has been a busy day of therapy. Feeding therapy was first and it went well. Her therapist took a class this weekend in Myofascial Release in the face and neck and was excited to try some of the techniques on Reagan. She was very cooperative, especially since it involved some serious stretching. Her therapist also noticed today that she seems to be getting more coordinated with her tongue, which is great, she needs that coordination to help her manipulate foods (instead of just formula). Then we moved down the hall to occupational therapy. She did some swinging and ball work with Reagan and was very happy with what she saw. By putting her in a frog like position on the ball, she was able to break up the tone in her lower extremities while encouraging her to bear weight through her arms (this made for some really cute pictures). She was a little whiny at times, because after all it was hard work, but all in all she did great! After two intensive back to back sessions she was pooped and fell asleep in the car on our way to her Feldenkrais lesson. She slept through most of the lesson but her practitioner didn't seem to mind since it allowed her to work on areas that would be more challenging if she were awake. She did wake up toward the end and bent her legs up toward her chest and kept them there for quite sometime (which is out of character for her). Maybe it's a sign that she's loosening up? I hope so. Tomorrow is an exciting's Reagan's first session of aquatic physical therapy. I hope she likes it! I think she will but you just never know. The physical therapist from Texas Children's, the one she's already seeing, is going to be doing it...which is great because we already know her and like her. I can hardly wait to see how she looks in her bathing suit! I'll have to take some pictures. Seizures are still rough. At this point we're not seeing any improvement with the Banzel and it's hard to tell if they've gotten worse. When they're this bad, it's hard to tell if they're getting worse or just staying the same. It's so frustrating to watch her bombarded all day long with these things! I decided to go ahead and increase her Banzel dose tonight. So now she's at 1/4tab (50mg) in the am and 1/2 tab (100mg) in the pm. I want to see improvement. I mean really, enough is enough. She SO needs a break. Please keep her in your prayers...we need this to work!


Debbie said...

What a cutie pie! Hudson's P.T. uses a big ball like that too to stretch him out.
I am doing the same "wait and see" game as you with our new thoughts and prayers are with you daily!

Jamie said...

ohhhh look at her! like shes saying "look mommy! look"! the ball is a great thing! I picked one up at TjMaxx for like 10
Keep Strong...cmon Banzel!!