Prayers needed. Ally started to have trouble yesterday (after doing an amazing job driving her powerchair for 1/2 hour and in her stander for 1 1/2 hours). I think we moved something around that was starting to brew since she had a big desat to 40 when I was moving her from her stander to lay down. We had to use some o2 overnight and start extra breathing treatments. I will be getting a cipro antibiotic in a little while. She is doing better with no o2, but fevers up to 102 and creamy yellow/green secretions now. Sorry for the yucky visual. Hope to be able to handle this at home, but will go in to the hospital if she has bigger drops and her left lung goes down. For now, Billy and I will be doing treatment every 2-4 hours and watching her carefully. She is in good spirits today, but was exhausted and working too hard last night.
Our new tentative date for our planned hospital stay is Monday, January 18 – Thursday, January 21st. We will be switching to the trilogy vent/bi-pap to offer Ally more support for when she is sleeping and if she gets sick. There are tons of pros to make this breathing machine switch. We will also be getting two trilogies since when sick Ally is bi-pap dependent 24/7. They want her to spend 24 hours on each machine before going home to be sure everything is working properly. Hopefully, we won’t have to go to the hospital before then. It is still full and lots of big germs going around.
Thanks again for your prayers and well wishes,
Tina, Ally and Family
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Update at 6 pm 1/9/10 (from my Facebook)
Thanks so much for the prayers for Ally. She is doing okay for now. We are doing treatments every 4 hours since she is holding her sats between without any o2 at all and we aren’t getting as much gunk out and she still has lots of air movement in her lungs. We started cipro antibiotic. I got a 4 hour nap and woke up to Billy begging for help for a poopy diaper that went all over and her refluxing a little. At least he is helping some.
Had plans to go out with good friends tonight (never do that, or VERY rarely) but had to cancel. Billy’s helping, but he can’t hold the fort when Ally’s sick. I also wouldn’t let him hang out with friends if she was having trouble, so I’ll be okay. Gotta look out for Ally, as that’s most important.
Angel Ally Blog - SMA Type 1 
Hi my name is Debra and I have been praying for Haylee Machek for a while now and her mom has sent me information on others with SMA to pray for. Please know that I am praying for Ally and the many others who suffer from this disease. I do not have children or grandchildren with this disease but was a Special Ed Teacher with Physically handicapped children and also a Preschool Teacher for many years until I retired to stay at home and care for our home and pets. My prayer for Ally and all of you is this: Heavenly Father I ask that You place Your Radiant Healing Banner over Ally and heal her body of this disease. I ask Lord that You be with her family and those close to her and comfort them and strengthen them. I ask Lord that Ally , Haylee and other children like them never have to suffer from SMA ever again. Let them be cured and let there be a cure for all diseases that affect our children all over this world. I pray this in Christ Holy and Blessed Name. Amen
Tina, Ally, Billy & all your family. Please know that we are carrying all of you in our hearts. Please give Ally hugs and kisses from Sophia’s GaGa.