I’ll update about Ally’s Amazing 4th Birthday soon, but wanted to post a video (or few if I find the others) of the sling system I desperately want to get Ally.
I am trying to convince the school system to get this for Ally since it will help with her independent functioning (allow her some actual free movement to create coloring, painting, maybe even simple writing, participate in movement during songs….) but OF COURSE I have to run into bumps and more bumps. Is anything with schools and the medical profession, ever easy? It’s not enough that we have to fight to keep our children alive and breathing each and every day? Actually, sometimes I only have to do a little advocating and I am very happy with Stock school’s program when we are able to attend the actual school, but I’m getting frustrated with people who have never met Ally deciding things for her and how much they are trying to limit her abilities with the homebound program. I am going to advocate some more through the school, or FIND a way to purchase these on my own. Ally needs a floor mount, wheelchair mount, and two actual slings. I’ve heard that Jaeco, the sling company, does not sell privately to parents (and tried to contact them thru their website with no luck), but other websites have greatly raised their prices and sell them (last resort I might go this route). From Jaeco, I believe the slings are only $300-$500. Frustrating, that she doesn’t have them already since I started asking about this last January.
Maybe I can borrow a sling from an sma friend of Ally’s that live in McHenry and prove it would work for Ally? Sophia’s parents, if you are reading this, can you give me a call. Also want to know if it is okay to post a video/link of Sophia here with Veronica. Thank you Debby St. Onge for sharing this video of your big girl Veronica.
Have a great day everyone,
Tina
Angel Ally Blog - SMA Type 1 
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