Dylann 5 days old

Dylann 5 days old

Tuesday, March 9, 2021

19th trip to Philadelphia





Friday was our 19th trip to Philadelphia. I can't believe we're at that number. Time has really flown by. It was pretty quick and non eventful. 

The airports were pretty empty and flying Delta means we get the whole row to ourselves. We landed Thursday afternoon and stayed in a surburb just northwest of the city. 

 We saw our MD first thing Friday morning. He really just said the same things as our last visit in September. Hes recommending basically a repeat next summer of everything we did when she turned 4- 8 ponseti feet casts over a few weeks then: another hip surgery/osteotomy, 8 plate in her right knee, and ankle tenotomies. then into an eight week petrie cast. 

 Her hip has already had two surgeries. The first one at age 2 was to get it into socket. The second at age 4 was to make her socket more rounded as it has formed more in a straight line when dislocated. While hes happy with the progress, he wants her socket even more curved. Right now theres a small part that is getting sll the pressure when she walks and hes concerned over time thatll cause her alot of pain and arthritis. Im honestly on the fence about this. That surgery at 4 was a beast and Dylann was in alot of pain. While I dont want her to have pain later, I also dont want her to have pain now. 

 Her knee I was expecting. Her right knee was straight after her surgery when she was 4 but has regressed to about a 15 degree contracture again as shes grown. She was walking much easier when that was straight with her short brace and now only will wear her tall brace on that leg. Ultimately if shes going to walk without braces or at least not tall ones, getting her leg straight is important. This means putting in what is called an eight plate- a little peice of hardware that goes over the front growth plate. It stops her front growing but keeps the back growing so the knee straightens over time. Once her knee is straight then it gets removed. Usually about 3-6 months. Its an easy procedure however it was very very painful the first time Dylann had it done. She then has to be in casts for 6 -8 weeks after. 

 Her feet are regressing so she needs the casts and a heel cord release again to get them in the right position. Shes had this so many times I cant even recall. Maybe 100-150 casts and 5-7 heel cord releases. 

 So it probably means spending most of summer 2022 in Philadelphia. This year we are just going back in the summer for a check up and get fitted for new braces then picking them up before school starts. 

 We are in a research study for AMC so after our appointment we gave our samples for the genetic testing panels. The rest of the day we just hung out in the city and ran errands and went back to the airport at 4 for our even flight. We met Jeremy and Micah in Destin and just going to relax in the FL sun for the week!




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