Tiny Ally update 1-15-10

Ally is doing better, but not 100%. Still some fevers off and on, but they are controllable with motrin and tylenol. Extra time on her bi-pap breathing machine and some extra treatments have helped a ton. She is actually in good spirits and enjoying her movies and her homebound school time too.

Plan is to still go the hospital on Monday to switch her machine, sleep study… It’s not a surgery, just making sure we have all the right settings for her new machine. Gotta make sure they aren’t too full still. It can change easily at this time of the year. I’ll keep everyone posted as I can.

Meeting at school was kinda crappy, as I thought it would be. She will only have consultative PT and OT when homebound, but they will be coming out to help directly at the beginning of this quarter and as needed. I feel that the school should be providing more to meet Ally’s independent functioning goals, but they are not including them in her new homebound IEP (which is more limited than a school plan). I’m aggravated, but I will see how things go for now and research more into the laws as I have time and energy. Seems like tons of other SMA kids get these services from the school in other states, but Chicago and IL are not doing it (at least not much). For now, I need to focus on the positives that we have with the school — excellent homebound and school teacher, great homebound speech pathologist, help from the assistive technology department and tons of support staff that do care about Ally. Since her homebound teacher is so great, her and I will do our best to help Ally and she works at the same school as the therapists, so she can talk with them often. I’ll also work more with the nurses to be sure we are doing stander, wheelchair, computer and swtiches as often as possible. They are willing, but it often takes two people and I need to be sure we are all comfortable and knowledgeable so Ally stays safe. I’m still getting more comfortable with Ally’s tlso and positioning in her stander and wheelchair, plus the wheelchair still needs adjustments, a better controler, or even better her own. We’ll make it all work and I won’t give up on being sure Ally gets what she deserves and needs to have the best life possible.

I’m a bit exhausted mentally and physically, but I’ll regain my energy.
It’s worth all the trials for Ally and our family. I’ll need to write a little more about Melissa and Kristyn too soon.

Thanks again for your support and also prayers,
Tina, Ally and Family