Going to philly ..

Ever since Dylann's orthopedic appointment last week the treatment plan has been weighing on me. It just feels like nothing was tried and even without an X-ray we are going right to major surgery that involves cutting out much of her ankle bones.

I then got her note from the visit and it said some things that were not told to me during the visit about her prognosis. So, it prompted me to talk with my AMC moms support group. They all said the same thing, something I have been considering for some time, was to go see dr VB at shriners Philly who is the AMC expert. He was at the conference I went to in July so I had a chance to meet him and hear his approach. He quite honestly performs miracles on these kids I've seen. He helps them walk when all the other doctors say there is no chance.

So, I called today and we will be going to philly between March and June of next year to start treatment. I don't know much more than that. I don't know what we will do in the meantime. We might start at MPLS Shriners to see if they're willing to cast her and do a heel cord release in the meantime. I plan to talk with dr VBs nurse about suggestions.  I don't know how we will make this work in Philly. She could need weekly casting and /or surgeries. We have a lot to figure out. Maybe it means we move there for a short time. Lots to consider. What I do know is that I need to know she was given the very best care and I think this is really it.