3.20.12

Oh the ups and downs of therapy!
The last time I posted I was feeling really excited about the school therapists' ideas and the fact that they were finally on board with Aimee. Now here I sit on the other end of the excitement spectrum. Of the 4 types of in school therapy that Aimee is receiving, 3 of the therapists are working with her as a group. The first time that they came, I wasn't informed of the time they would be there. When I came to pick Aimee up from school, what I heard was a bit disturbing. They had tried to put her in a modified stander on her stomach, but she isn't strong enough to keep her neck extended, so she fell forward into the bar and was choking. She had a sad red mark on her throat to prove it too. :(

The second time I made sure that I was there with her. We came in to the school before class at the designated time, but they weren't at all ready for her. They spent over an hour trying to hook up equipment, replacing batteries, moving tables, ect. Aimee was so overwhelmed that she completely blocked them out. When they were finished setting up, they seemed surprised that she wouldn't wake up to work. Sigh. Maybe in school therapy won't be so effective after all.

 The one neat thing that the school has provided is a button that attaches to the headrest of her chair. When she pushes the button by leaning her head to the right it activates a musical butterfly. The above video is of her excitedly playing with this toy.

Aimee and her cousin, Kenzie, playing in the balloon fort.

Remember how we lost our funding through DDD to continue with her out of school therapy sessions? Well, we were able to have her evaluated and put through a referral from her Neurodevelopmental doctor to continue therapy sessions. So far, our insurance approved her for 7 OT visits to be completed by April 30th. On one hand this is great news, because we can continue working with Shaun, the therapist that Aimee has made real progress with this last couple years. The only little problem is that in this short of a period of time we need to show significant progress in order to have more sessions approved. :/ Aimee has definitely made huge progress this past year, but I'm not even sure the amount she has done in that time would be enough to satisfy them.

Aimee and baby Caleb

I took Aimee in for her 3 year well child check up with the Naturopath a couple weeks ago. We really love this doctor as he has seen Aimee since she was a small baby and has helped us through so many challenges. Aimee has grown by leaps and bounds this year (except for her head) and overall has been pretty healthy too. The only followup issue we came out of the appointment with was her lazy eye. Aimee has just started to track a few objects past midline in a very controlled environment, but when she does the right eye continues to follow the object for a moment and the left eye wanders back the other way. I am going to take her back down to the Ophthalmologist soon to discuss this with them. The danger if this continues to happen is that her vision will be blurry and her brain will actually shut off the wandering eye to preserve clarity. We certainly don't want Aimee to miss out on any more sensory input!

We have been having quite a bit of trouble getting Aimee adjusted to the new pressure and mask on the BiPap machine. Last night she only wore it for one hour. I finally took it off because the poor sweetie was just sobbing. Breaks my heart. We had such high hopes that it would increase her energy levels, helping her to be more awake during the day. So far it seems to have had the opposite result. I'm nervous that when I take her in for the follow up appointment with Pulmonary next month they will find an improvement in her blood carbon dioxide levels and insist that we continue using the machine despite the negative impacts that we see.