Today's first second opinion visit took us to Doernbecher Children's Hospital in Portland, where we met with PT, neurosurgery, and the head of the spina bifida clinic. (The second second opinion visit (with pulmonology) couldn't be scheduled the same day.)
We came away with a lot of really good information and feedback, and more understanding of where things stand. The big takeaways:
- Developmentally, Evanna's doing really well.
- We now understand the difference between muscle tone and strength, which really hadn't been explained to us. (Tone is basically the muscle structure at rest, whereas strength is the muscle in active state. Evanna's muscle tone is low/weak, but her strength has greatly improved, and with PT, OT, and what we do with her at home, will continue to do so. That increased strength can compensate for some of the low tone, but not fully.)
- We should get an eye exam and possibly a full spinal MRI for her in the near future, not because of any apparent issues, but to have a baseline established for treatment in the future. (Essentially, when certain symptoms present, can judge against that baseline.)
- Separate doctors commented on her tonsils seeming large, so we will be following up with ENT to have checked, especially since that could be contributing to the obstructive portion of the sleep apnea.
- For her chiari, the best route at this point is to wait and watch, because hers doesn't appear to be under a lot of pressure. And as she grows, that area of the skull and vertebrae also grows, and could give additional space, which could relieve pressure that is there...and she could essentially grow out of the chiari symptoms. Further decompression at this point isn't advised, both because it doesn't appear it would do much, if anything, but also because it is very risky in little ones.
So while there was nothing earth shattering and no major insights, it was still well worth the time, since we do now have a better understanding of her status.
