17th Philly Trip

Getting close to 20 Philadelphia visits for Miss Dylann  since she was 1. I still remember our first visit 5 years ago and coming home thinking - I have no idea how on earth 🌏 we’re going to have our MD be on the other side of the County. This is literal insanity to even be considering this.   For those of you newer to our journey, we had seen 4 Orthopedic MDs in MN with minimal success. Saying things like she’d never walk so no plans for casting or to try any interventions or lets focus on getting her in a good position for her wheelchair. Feeling defeated and confused why everyone was giving up on my 7 month old, we met Dr vanBosse at the MPLS AMCSI conference. He told us don’t let anyone perform surgeries and get on his wait list. So we did- for a year- and showed up here for appointment #1 on 7/6/15.  

When questioning back then how to continue to travel for care lots of others AMC mommas said- you just figure it out. So we did. Best decision ever! Now she doesn’t stop moving and not much can get in her way. :)

So how are things going... some background, we had a braces mishap in March. We were in FL for Spring Break and let Dylann wear her braces in the Ocean. They got pretty sandy so Jeremy hit them on the ground to shake the sand out and they both cracked on the heel.  😳  We tried to do what we could to salvage the situation with a little glue and gorilla tape  since all clinics were closing due to COVID. The cracks turned into chunks coming off the braces. We had an appointment in May but I didn’t feel comfortable coming then with the Northeast COVID numbers so we bumped it today. We debated moving it again but our braces were in a pretty dire state so here we are. 

Our travel experience was pretty good. Airport was pretty empty, plane 1/3 full, no one at the car rental place, and everything on time. Full time mask wearing has been an adjustment. There was on guy on the plane who wasn’t having it and threw a few fits when he got called out. 🤣 Got in late and up early for the hospital. 

Dylann was asked to be a part of a clinical research project on AMC so we spent time taking pictures and answering a lot of questions. If she is part of the next round we get family genetic testing!!! 

Our visit didn’t provide the greatest news. We had a hip X-ray and VB said he’s no longer happy with its progress. He wants her to have a third hip surgery in a year 😢. We had a talk about the risks of not doing it. She also needs another knee procedure on righty to get it straight again ... and more feet casts. 

So he’s recommending next summer we do 3 weeks of casts then hip/knee/ankle surgery and 6 weeks back in the Petrie cast. She was in this on her 4th birthday - it’s the long leg casts with the bar in the middle. UGGG.

Then I had to face to music with the brace shop- she wasn’t very happy with us and said our braces were in a “catastrophic state”. 🤣😂. So we had to measure for new ones then they made some short term changes to the current ones until we come back next month to pick up the new ones.

So- we’re tired and a little sad. We’re going to hunker down for a few days in a condo by the ocean and relax then make our way back home. That should help! We miss our Dakota Melon but she’s staying with a house with 3 dogs and appears to be having the time of her life! 🐶