So Skylar is doing really well - she was all smiles as soon as we took the bi-pap off her today. However, when we had to put it back on at night she was super fussy. I don't blame her, but hopefully she'll get used to it quickly and can truly benefit from the rest it can give her instead of trying to resist it. She's sleeping well now - I am going to crash as soon as this posts and hopefully will sleep well too.
Ashley Manross is going to visit for breakfast and she said she'd be willing to donate some more supplies to us like a power supply for the car so we can travel more safely with Skylar's machines - huge blessing! She's already saved us over $500 through her generosity of donating her little boy's SMA stuff to us and we are super grateful!!! I hope we can do the same for someone else in the future. Anyway, we're looking forward to seeing her again and the nurse staff in the TICU is excited to see her as well.
I'll leave you with a little poem that someone shared with me through our website contact form:
As tho grifted in a vine
you are rooted on a tree,
Oh wild orchid!
You are beautiful to me.