[armadsen]

Thanks for sharing about your daughter. It's good to hear from other parents dealing with it. My daughter with spina bifida is only 18 months. It's early of course, but so far she's right on track cognitively and socially. I expect she'll be in a wheelchair full time, but don't know for sure yet. She's also just the most joyful, loving, social, happy toddler.

I know what you mean about elevating otherwise normal kid illness. She had her first shunt failure in January. It was pretty stressful going from "hmm, she's fussy" to surgery within less than 24 hours. But she was back to her happy self with hours of the surgery too, which was a pretty stark indicator of how much the shunt is doing for her.

[wincy]

One of the nicest things anyone ever did for me was the day after she was born, when I had just started at a new job, an older dev asked if he could talk to me and pulled me into a meeting room. I didn’t know anyone there and was confused. He’d overheard me talking about my daughter just being born, and said “I’m nearly 60, I have spina bifida, and I want you to know it’s going to be alright.” He stressed how important doing a regular catheter routine is, as the most likely thing to kill him in the next 10 years is kidney failure due to bad catheter habits as a kid and young adult. Also, overnight foley catheters with a bag has been a lifesaver, and gave us our sleep back. The doctors often just won’t mention these things, and the quality of care can vary greatly depending on your care team, as I’m sure you’re well aware. At least the doctors seem to have some respect for us as caregivers to a medically complicated child and they often trust our judgment.

Hopefully it’ll make you feel better, but the shunt revisions became far less common for us as her growth slowed down. She had one around a year old, but they put a good amount of tubing in there, and they haven’t had to go do a revision in the past 6 years.