Lyla had a good day yesterday despite being a little crabby. We had an afternoon visit from Uncle Matt and then a full afternoon of therapies. I addition to OT, PT and speech, Lyla also had psychology yesterday. She asked that I come in and I got to watch while the therapist did some testing with Lyla. I was beaming with pride as she asked some pretty tough questions and Lyla answered them with ease. That's my smart girl!
Grandpa came over in the afternoon too and he took Lyla in a trip to the cafeteria while I made some cookies in the RoMac. It was nice to do something by myself for a while. I was also proud of myself for improvising a recipe and having it turn out pretty well. Dad stayed for a while and then Lyla and I went to activities and had dinner. She ate her broccoli, but I got to eat her grilled cheese since she got comped chicken nuggets in the cafeteria earlier.
After activities I tried to keep things chills in an effor too help Lyla calm down and get to bed on time. Then Masud called and said he was getting off early so we waited up for him and ate teddy grahams from yet another care package. Thanks Vanessa, Ben, Anikah and Joey for all the awesome treats!
Dr. Mikesell stopped in and we talked about the plan for Lyla going forward. Her first thought was to switch Lyla from nebulizer treatments to an inhaler. Now, instead of having to do bed treatments throughout the day, she will use an inhaler with a special breathing chamber to help her get the medicine. The whole thing takes about two minutes and so far is a Godsend! It's much easier for Lyla and it only took her one time using it to realize this was far better than the old way. Dr. Mikesell also said that if Lyla gets a cold we will need to visit her right away. Since even a little cold will be tough for her, she will need to be seen every time. With the new inhaler system, we will be able to given her the medicine at school or have Faye give it to her at daycare should she need it.
They also want to do a sleep study and said that if a spot opens up here before we go they would do it. Since we're going home tomorrow I doubt that will happen, so we'll have to schedule something for later, probably in a few weeks. W still don't really on wow why Lyla is having issues with breathing and sleeping, but the sleep study will hopefully help out. They want to make sure she is getting good sleep and that her brain is telling her to breathe during her sleep. Until we get things sorted out, and maybe even afterward, Lyla will need to sleep wearing a pulse oximeter and have oxygen on standby.
Today she is doing well, but is still tired. Her body is not used to so much activity and she is still working on getting her muscles and her cardio conditioning back to baseline. She had a GREAT time in PT today and rode her trike all the way through the gym and across the skyway and back. She had a huge smile on her face and was racing like a champ! She was totally exhausted afterward, but those few minutes of fun were worth it!
She's at therapy now, then has psych and TR before she ends her day. One more night of pot roast and Easter eggs at activity should make for a fun last night in the hospital!
Pics: care package from Anikah and family, Strawberry balloon from Matt
Super yay! Going home is the best! Congratulations and happy homecoming.
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