As many of you know, I just adopted a 15 year old young man named Ronnie. Ronnie is deaf and has spina bifida. Since my youngest daughter is also deaf, making sure Ronnie has all the appropriate supports isn’t new to me. But the spina bifida is.
I have a bunch of questions. For instance, am I taking him to all the doctors he should see, and if so, how often should he see each specialist? We have already seen a urologist, the pediatrician, the dentist, and the nephrologist. We have an appointment with a neurosurgeon also because Ronnie has a shunt. Am I missing a specialty?
And, how about leg braces. Ronnie came to me from the foster care system, and those of you who have adopted from foster care understand when I say he didn’t come with much. I’ve heard that braces have been ordered for him, and hopefully will arrive soon. Do we need a physical therapist to make sure they fit correctly? Then what is the physical therapist’s role after that? Ronnie really wants to walk. Will the therapist help teach that skill?
My next questions are a little more delicate, and if things like pee and poop bother you, you might want to stop reading now.
Ronnie uses a catheter to self-cathe. He does that every 3 hours during waking hours, and doesn’t cathe at all at night. Is this a fairly normal schedule? I know I need to discuss all this with the doctors, but I was looking for some real life advice from parents who have been there-done that.
Ronnie also uses a Dulcolax suppository for bowel movements. He HATES doing that though, and often I wonder if he really is using them. Are there any other strategies that could be used for bowel training?
And finally, are there any other important things I should know or questions I should ask about spina bifida? I know Ronnie has some really significant bladder and kidney problems and the doctors will be addressing those. But what else? Should I expect a normal life span for him?
What am I leaving out…???
Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.