We had Spina Bifida clinic last week and got some expected, but not fantastic news, that Addy has some early symptoms of tethered spinal cord. Spina Bifida is a condition (disease? I'm not looking to make this a semantics issue.) that hits several medical specialties, which is part of why specialty clinics are so important. Because the early symptoms of tethered spinal cord (neurosurgeon) are changes in bladder (urologist), bowel (urologist or gastroenterologist), or gross motor function/mobility (orthopedic surgeon), it is critical that your doctors can and do talk to each other. Seeing them all on the same day, at a facility where they all have access to all lab reports, diagnostic tests, etc. that have been performed at that facility is a time and sanity saver.
So we waiting for a chance to see an MRI of the spine to be able to visualize the extent of the tethering that is going on (most, if not all, people with myelomeningocele *look* tethered on an MRI, so most neurosurgeons act based on the severity of symptoms).
In the mean time, we also had a swallow study done today to try to figure out what has been going on with eating. The good news is that it seems to be just texture issues (still) and a wicked case of acid reflux. So our next step is to resume feeding therapy and try to figure out what is causing the reflux.
The up side of having tests at the children's hospital the week before Christmas is the fabulous holiday activities they have! There was live Christmas music near the food court today, so we stopped to dance for a little bit before heading back to the car.
