Well, Monday was a little rougher for Ally than I expected. She made sooo many strides on Sunday towards better health, that I was hopeful we could maybe keep our orthotics appointment to get new therapy shoes and maybe go to Shriners. I figured I’d let Ally lead the way if we were going or not, and she made it CLEAR we were staying HOME. Unfortunately Ally threw up 3 times on Monday and her low grade fever stayed constant most of the day. She enjoyed watching her cartoons, but was very flush and working harder, so we took it easy and our new nurse helped do some extra breathing treatments. I also simplified her food mixture and slowed down her feeds some more.
By the evening, Ally began to turn the corner again, for the better. Megan, our 1x a week overnight nurse, came in and Ally has done very well for her. I’m sure a lot of it is the hard work and prayers paying off. Ally was able to tolerate doing 2 full breathing treatments, including her shaky vest without throwing up and her heart rate stayed down. She even painted a little with Megan and then fell asleep. It’s 1 am and she is sleeping peacefully. Her heart rate is not back to its complete norm, but fevers are gone (knock on wood). Oxygen sats are also staying good without using any.
Doctor update – I talked with a Nurse Practitioner of Ally’s pulmonologist Monday morning to update them on our EXCITING weekend. They had some notes, but I gave more details and asked if we could have permission and orders for the higher vent settings. I also volunteered to bring her into the clinic if needed to allow these new orders to go through, but he was already overbooked. He must have been sooooooooooo busy since we NEVER got a call back. He knew Ally was stable, so must have needed to focus on some sicker kiddos. I did call in the early evening and talked to the on call pulmo to see if there were any updates and ask for official higher vent settings. We were given a verbal okay to keep them set at my “Mommy” changes till at least the morning : )
So for Tuesday, Valentines Day — We will be overall keeping it low key. We may pop by school to deliver Valentines to the kindergarten and a birthday gift for Ally’s AMAZING 1-on-1 classroom aide, Ms. Janet. Ally will lead us in making that decision though. Billy already had the girls and my Valentines delivered. Yummy – chocolate covered strawberries!!! I’m trying not to be upset about how much they cost and focus on how thoughtful he was (LOL). Maybe I will make a special dinner for us?!
Happy Valentines to Everyone!!!
Thank you again for your prayers and support!
Angel Ally Blog - SMA Type 1 
Happy Valentine’s Day Ally and Family.