Several people have asked how Ally is or may be wondering. Thanks for asking. She is doing amazingly better. Still extra bi-pap time, but back to only 2-3 treatments a day and fevers finally stopped today, I think. I actually haven’t checked since this morning. Also on an antibiotic. My baby is sooo strong and God is good. Thanks for the prayers.
She did wonderful with her Art teacher and her school teacher (at home) today. She used her switch to create spin art Valentine decorations and tiny paint squares. Then during school time, she was amazing on her computer using her eyes to tell colors, shapes, “turn the page”, her name…. I’m so lucky to have great people working with her.
Don’t think I mentioned it yet. I have her IEP school meeting this Thursday at 8:30 am to make her plan for the next year. I was looking forward to this meeting, but I’m very nervous and worried now. They are going to try to change her PT and OT homebound services to consultative. This means, she will not have a therapist working directly with her to help her with her powerchair, standing in her stander, using switches to communicate… unless I bring her to school. I will be working hard to advocate to keep these services when she is home (mostly November – April and when sick or the school is too germy). Gotta talk to a lawyer again about the laws and responsibilities of the school. I also might consider bringing her to school 1-2 times a week asap if they are legally not responsible to provide in the home. Then, they will be helping with nursing, busing, and sooooo much more. I am only trying to give Ally the best life possible. She deserves to learn and be as independent as possible, just like an other 3/4 year old (whether she is home or going to school daily). Also need to explore options for when we are in school that include the least restrictive environment. She is in a self-contained special ed classroom with wonderful teachers, but I’d love for her to spend time in the blended classroom too. It will be a long meeting, most likely 8:30-12:30 and reconviene if needed. So much fun, but worth it for my angel.
Gotta go. I’ll try to update again soon.
If you haven’t seen this video yet, please take a couple of minutes to learn a little more about SMA and the children affected by it. Thanks ; )
Angel Ally Blog - SMA Type 1 
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