Yesterday, I saw Melody move a toe! One toe, for the first time ever. One little toe that brought tears to my eyes and still makes me weepy. Who knew a toe wiggle could be so beautiful?
Yesterday was Melody's second spina bifida clinic and my head is still spinning. We saw four doctors, her case manager, and a social worker. There is so much information discussed, it can be quite overwhelming. Thankfully, our wonderful case manager sums it all up and schedules all the follow up appointments and generally makes sense of everything and writes it on one summary sheet.
Overall, the doctors are very impressed with Melody's health. Her shunt is functioning well and her incisions are all healed nicely. Melody cooed and smiled and charmed her doctors and nurses and generally let them know what a social little girl she is.
This was our first consult with the pediatric orthopedics. I had concerns about Melody's hip, which were confirmed by the doctor. Only, it wasn't the same one I thought had problems. Her right hip moves in and out of the socket easily. So, she will soon be fitted for a "pavlick harness" which she will wear 23 hours/day for several months. It is our hope and prayer that this will solve the problem. If not, the next options are mostly surgical and may not be feasible as the underlying reason for the dislocation is Melody's spina bifida. The thought of the harness is a bit overwhelming, but I think that is the way any new medical intervention is. Once we get used to it, we'll be just fine.
Melody moves her hips and knees, so the doctor was pleased with that. He showed me how to stretch her feet. Her feet curl up and look like beans on the bottom. The doctor wants me to stretch them daily so they look less "beanie." They need to be flatter for her to walk someday. Also, her feet need to be stretched up as they point down naturally. She'll need to have more flexibility in her ankles to walk, so I'll be stretching those daily as well.
I was able to consult with two Urologists. I had already consulted with one and wasn't really pleased with our conversation. Not too long later one of the more experienced urologists "accidentally" entered our room. It was a "God Shot" for me. He was extremely helpful and had a completely different perspective and experience level. He was able to get Melody scheduled for the CMG test in early March, which is earlier than we would have been able to do it. This test will test the nerves and function of her bladder. Based on the results of that, catheterization may not be necessary any more. Here's hoping!
We will return to spina bifida clinic in late March. By then Melody will hopefully already had the CMG test and be wearing the pavlick harness and also had a hip ultrasound to see how the harness is working.
For now, we'll be stretching beanie feet and watching for toe wiggles.
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