We went to the spina bifida clinic yesterday, and it went really well. I was dreading it, because I didn't want to hear about her limitations yet. (I'm a wimp) But they were very encouraging, and although I was a bit emotional, I left feeling good about her prognosis.
She has good strength in her upper legs and knees. The muscles are well balanced through the upper calf. She will walk! Yay! They (the pediatrician and physical therapist) were both quite certain about it. She will need braces for her feet and ankles most likely, but it's still a wonderful thing to hear.
Her main issues long term will be urinary and bowel continence. So, we will see a urologist within the next month to get established there, and keep an eye on how that goes. Her head growth was normal, so the ped had no concerns about hydrocephaly (we knew that from our last ultrasound), and he went over the symptoms of problems with the AC II malformation. This is something that most SB people have. Due to the spinal deformity, the back of the brain gets "pulled" down during development. Most of the time, this doesn't cause problems, but sometimes babies have trouble with breathing or swallowing, and other things. Madison doesn't have any symptoms that would indicate a problem with this.
The therapist gave me some stretching excercises to do with her. She flexes her legs and feet all the time, and the extensor muscles are not developed, so we need to make sure she doesn't have problems due to the imbalance there. I figured we would be doing something along those lines.
We go in to see her regular doctor today, mainly so he can stay up to date on her and keep familiar with how she's doing. I'm very pleased with his approach to her care.
2 weeks ago