We got here Thursday afternoon and was settled in the hotel about 4. We didn't get into Ronald McDonald house so stayed in a nice city just north of town.
Friday was appointment day and was a long day. First Dylann had physical therapy. The therapist measured her shoe lift to see if that still worked and worked on some walking. Last time we tried therapy here, in March, she screamed the entire time. The therapist told us Friday she was prepared for battle 😂. Dylann did great! She didn't fuss once and did all she was asked. We left her shoes the same.
Then we waited for our appointment. There were lots of families and kids there so Dylann played with lots of friends. We got in to see Dr. VanBosse about 300. It was both a good news/ bad news appointment. We started with her feet. He said her right foot is regressing so will need recasts at some point. Timing will depend on how fast she regresses. He also said that same ankle is twisted. Our bones that are side to side are front to back. He said he may correct this surgically at some point as its twisting her shin. We did a bunch of brace maintenance and measured her for new ones to be ready when we come back next time. That took an hour as they actually cast the kids then cut them off to get the shape used for the braces.
They forgot to do a X-ray when we arrived on her hip so we had to do that then come back for a second appointment so that's why we ended up at the hospital til 7 this time. Good news is her hip looks great! He said he's very pleased. He got her standing on her own and did some walking. He actually wants us to take her seat off the gait trainer to get her working harder when she walks.
I asked about when she needs to have her surgery to take out her plate on her femur. He said usually a year after surgery but is thinking he may wait until we do her right knee surgery when she's 4. It depends on how her X-rays continue to look cause the longer he waits the harder it is to get the plates off.
The new thing he said that I didn't like hearing was her back is starting to look uneven. Kids with AMC can have bad scoliosis and other back impacts. To now she's had no back issues. He said it could be the AMC or it could be her body trying all these new things with walking and her body adjusting. We will keep an eye on it. We see Angel Friday so will ask her but I think we're going to be in the market for a really good child chiropractor who's worked with joint/muscle disorders. Let me know if you have any leads with that. Were scheduled to come back here in 4 months. Even though Dylann is like any other two year old who has tantrums and can be impatient, I continue to be shocked at how perfect she is with all of this, better than me usually. She spent 9 hours in a hospital waiting room and visit rooms. She stayed entertained for 1.5 hours waiting in the room to see the doctor by playing with lights and gloves. She obliged when asked to put her braces in and walk 5 different times for different people. She layed perfectly still on a hospital bed for an hour while she got casted and molded for new braces.
Then she sung us songs the 1.5 hour drive to the beach and smiled the whole time. She's pretty inspiring!
Friday night we headed to Ocean City to hang at the beach for a few days then home Monday afternoon. Here's some beach pics.
