We had rounds with the doctors and the plan is to wean Ally’s bi-pap settings, meds and then treatments. We will continue IV antibiotics till we leave and then switch to oral if needed. They are also helping me coordinate some other medical things for Ally – vision, hearing, nutrition, dexa scan, and possibly a primary care physian from Childrens to oversee everything (Ally’s current pediatrician is at Lutheran General). Almost all of this will be done outpatient, but the hearing test might be able to be done today or tommorrow. We are doing vision and hearing just to be sure, although we don’t sense any problems. In addition, Respiratory Therapist Silvia, has been helping us a TON with Ally’s bi-pap masks, a humidifier/mount for her stroller wheelchair and some problems we had recently with our DME (including a $6000 bill for a humidifier). She is an angel and a wonderful addition to Ally’s team. I am glad and grateful to have some help as I usually try to coordinate everything on my own. I am also happy for the positive vibes today as Ally is MUCH better and her xray supports it too. I expressed my concerns with some of the big bumps we have encountered and I’m glad things are going smoother. Dealing with another issue with food services, but just got off the phone with the director and we will see what happens as Patient Relations gets involved. He agreed that the last thing I should be worrying about is food issues that have already been resolved in the past. I am not a witchy mom, just want the best care for my daughter and to be included in all decisions.
Goal is to go home early on Saturday. We could really escape sooner, but the extra help with treatments will help Ally be at the strongest point possible. I’m feeling better with medicine, but I’m pretty sick if it wears off. Can’t wait to sleep in my own bed and be together as a family.
Thanks again for everyone’s prayers, support, ecards….
I’d be lost without my family and great friends.
Have a good day,
Tina, Ally and Family
Angel Ally Blog - SMA Type 1 
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