by This handsome sleepy boy had a lovely first day home alone with a nurse.
Mom survived without any panic attacks and I even came home to find him on less oxygen than he was on when we left (our goal is to keep weaning it down to get to 2L – he was at 4L, yesterday was 3.5L, and as of now he’s on 3L). There’s no real rush for it, but it’s a long term goal to get him knocked down and ultimately off of it. It’s seriously a blessing to know that we can leave home and that someone will have him taken care of.
I even have dinner in the crockpot so we won’t starve and maybe, just maybe, we will all manage bath times and bedtimes tonight while Aaron works late. (Where’s the wood to knock on?!)
Our 31 orders arrived today, so if I can get the kids in bed at a decent enough time I may even take a few minutes to try to organize things. Extra big thank you’s to everyone who ordered. Not only were we able to get a lot of amazing rewards from the party, but the commission from the party helped raise enough funds to cover the last part of his ambulance bills from our first visit out to CHOP. Insurance picks up a lot of things, but definitely not everything. We are eternally grateful to everyone who has helped is out.
AJ is slowly but steadily regaining movement in his left side. Mostly when he doesn’t realize he’s doing it – shifting in his sleep or reaching for toys. He doesn’t have nearly the amount of coordination or strength as his right side, but it’s very promising to see. He doesn’t start PT at home for another week or so.
That’s about it for now. Thank you all again for all your kind words, prayers, donations, purchases, and even company over the last few weeks, we appreciate it more than you’ll ever know!
