Hey folks. I’ve been mostly absent recently but following along via the email updates I get on this thread. Lots of hard things going on! Keep weathering the storm.
I’ve been pretty underground since October 11, when my daughter had her surgery. As with most of the other stories, it’s been an intense season but working toward ok.
I probably already wrote this, but people tend to ask “Did it go smoothly?” There is no “smoothly” when a 5yo is going under anesthesia. She woke up terrified and disoriented. We’ve since heard it described as “going to sleep and waking up in someone else’s body,” which would be a rough go for anyone but especially for a kiddo who can’t really process it or be properly prepped for it. We did what we could.
The following weeks were just all wrong. She caught RSV two days before the surgery and reached peak fever in the 24 hours following the procedure. She was coughing and vomiting and couldn’t sleep (like recovering from surgery wasn’t enough…) A few days later we all started feeling it so we made a mad dash for home (4 hour drive) before we got too sick to relocate. She did recover, but then caught a cold, then a second strain of RSV, then something else… she was essentially sick from Oct 9 until Dec 15 or so. We had to pull her fully out of school and get on antibiotics to prevent her from catching any new infections. It was too much.
Her first pair of new orthotics were also all wrong. They bruised her feet horribly. We had this drumbeat of “she needs to be on her feet, she needs to walk, she needs to learn how to use her ‘new body’ or she’ll settle into her old habits” and all the while these massive bruises were blossoming across her ankles. The first pair were delayed, then refitted about four times, and finally we got a second pair made from scratch in early December. I’m sparing the details here. It was a process.
Can’t forget in all these logistics that there’s a little girl in the middle of it. She’s worked so hard for every scrap of mobility and independence. And after the surgery, when her legs didn’t respond like they used to and everything hurt her tears hurt so much too. And then her smile, a week later, when she went back to PT and found her feet again, and things were actually easier. There are so many things she’s done for the first time these last two months, learning how to balance on her feet rather than just brace. There’s also been so many hours holding her in a chair in the night, helping her breathe, one breath at a time, as her spasticity and an RSV coughing fit don’t play nicely together.
And now it’s January. She’s healthy. We all are. I finally got some real sleep last week. She is standing straighter than she could before, walking faster. She’s laughing again and just being a five year old. She’s cruising to the side and lifting her feet in the air. She’s trying to do the hula like Moana and her movements are more fluid now. This is what it was all for - we don’t know where the door goes but something has opened up for her. This was the plan.
