Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
No, this doesn't mean what you think it means, but it does mean we are getting closer!
After getting up to 69.5 pounds, he dropped a pound the very next day. The doctor says those first few pounds were likely water and/or poop though and so they expected him to lose them, especially since the TPN in his PICC line has been stopped.
She wants him up to 80-ml of formula/fluids an hour without nausea or vomiting before she will release him. Today he made it to 70! The doctor says tomorrow or Friday should be our release day. In anticipation, I sent John and the kids home with a bunch of the gifts, clothes, and other away-from-home necessities we had accumulated over the last two weeks.
He is still tolerating broth and popsicles well and I am wondering if, now that he feels better, he thinks this is some kind of vacation. He gets so much attention it's not even funny. The art therapist comes to do art projects with him. The Child Life team takes him to daily events where he tye-dyes pillow cases, makes plaster of Paris creations, and enjoys Zoomba dance parties with other kids there, and there is an endless supply of volunteers who want to play board games with him, not to mention his ABA Becca who does crafts with him for hours each day. Add to that the visitors, cards, gifts, and well-wishes and who would want it all to end, really?! Today as the doctor was talking to us about his prognosis and possible release date, he said, "Go home? Noooooo! Not today, right?" Seriously. We, on the other hand, are over it.
The home healthcare center sent his IV pole, feeding pump, month's supply of bags and tubing to be changed daily, and baby formula to the house yesterday. We are set up and ready for the transition home.
Just keep praying he tolerates the increases. 80-ml...the magic number!
I am a Christian. I am a wife. I am a mom. I am an author. In that order.