Dylann 5 days old

Dylann 5 days old

Tuesday, June 26, 2018

12th visit to Philly 

Jeremy and I were trying to figure out how many trips to Philly there’s been so I went back and counted. Twelve. In three years almost to the day. Our first trip was 4th of July weekend 2015. Here are some pics from back then.


I remember thinking back then I had no idea how we were going to make it work to have a physician halfway across the county from us. But, we just made it work and here we are...for the 12th time.

We saw Dr vanBosse Friday for an office visit and X-rays. He had Dylann do a lot of walking in her tall and short braces. Since Dylann doesn’t love to unlock her tall ones to practice walking, the next time she needs braces remade (prob 6-9 months) she’s going to get GRAFOs- which are shorter braces but help with the knee extension when she walks.  Pic below. She did decide to walk a little with her tall ones unlocked after her appt.

He spent some time trying to pep talk her into wearing her braces all night.  The risk is big by not sleeping in them as her knee could start to develop a bending contracture again after all this work.  She ignored most of it and told him she didn’t like them LOL.  She has however slept in them since Friday which hasn’t happened in 4 months! Will see if this keeps up. We’ve tried everything.

He looked at her hip progress. Overall he felt things looked good. Her socket is starting to round out nicely from her surgery. He said the space between the socket and femur head is a little wider than her other one however.  That might mean in a few years he will want to do a third surgery. 😳  I didn’t even ask questions cause I’m honestly not sure we’re in for another one. I’d really need to understand what we’re gaining and risks of not doing it. It does not seem worth it unless it prevents long term major issues.. and I mean major.

We talked a little about Thursday, (tomorrow). Tomorrow Dylann is having another surgery. This time it’s to remove the pin in her hip and the 8 plates from her right knee. Should be a day surgery but Dylann likes to spike fevers after surgeries so not sure. Sounds like little to no pain ... hoping that’s true. We’re just hanging at the Ronald McDonald house watching a movie. Check in time is 6:30am for surgery. Send her some good thoughts tomorrow!


Also remember Saturday is AMC Awareness Day! Wear your blue and tag us on Facebook.

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