"New to Team" is the box checked at the top of Melody's Spina Bifida Team Center paperwork. We spent three hours this afternoon with Melody's new "team." We saw with the genetic counselor, neurosurgeon, spina bifida pediatrician, nurse/case manager, and pediatric urologist. Overall, the doctors were very impressed with how Melody is doing and we really didn't learn too many new things. She weighed in at 7 pounds even, and the doctors were happy with that. Her shunt is doing well and the doctors seemed impressed with how well her incisions are healing. Her big, bright eyes drew comments from the doctors as well. She can be really alert, when she is not asleep.
The one downside of the visit was that the urologist wants us to continue to catheterize Melody. I had really hoped we'd be able to stop, based on what we were told when we left the hospital. However, the urologist said they never tell parents to cath every 8 hours. She wants us to do it 3-4 times each day, and not at night. We were doing it 3 times/day, so this is not a really big change. There is a test they can run on Melody's bladder to test it's actual function, not just our guesses as to it's function based on cathing. Melody is too small to run this test now. The urologist would really like that test performed before we make decisions about cathing. It really makes sense, to be safe rather than sorry, but I must say I am disappointed.
We are very thankful for this new team. They are an awesome group of specialists and so knowledgeable. Melody will return in two months for her next visit with the team. She'll have a couple of tests run then and we'll also see the dietician and pediatric rehabilitation in addition to all the specialists we saw this time.
After that we'll return when Melody is 9 months old, and then every 6 months after that. When Melody is 9 months old, rehabilitation will do testing where they determine how much movement and feeling she has in her legs. We're a bit anxious to know this, but we must wait and see as it can change for the better between now and then.
What did you find out about physical therapy? Is that separate?
ReplyDeleteWe have an assessment with the Early Intervention program next week. This is the program that will provide physical therapy, I think. I'll know more after next week.
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