Dylann 5 days old

Dylann 5 days old

Saturday, August 10, 2019

15th Philly Trip

Just over halfway done! This is the going to be the longest visit and was the first time we drove. Dylann’s feet were started by to turn in again. This is common for arthrogrypotic feet. As the child grows the feet want to back to their clubbed position. This is corrected by doing ponseti casting which is a series of casts changed every 4-7 days while slowly moving into the right position. An average set is about 8 casts. Dylann just needed 4 which was good news as that meant a 2.5 week trip in stead of 4. After the casts then she has a minor surgery to lengthen her Achilles’ tendon and pull her heel down. That is scheduled for next Wed. We left MN Wednesday 7/31 in the afternoon and made it almost halfway to Indiana. We arrived in Philly Thursday evening and luckily got into the Ronald McDonald House. That always makes things much easier. Dylann has her first cast last Friday. She did amazing and left the room walking on them. She’s had no pain. This is a drastic difference from 2 years ago when she was up crying all night. Saturday we went and got some school clothes at King of Prussia mall. There happened to be a LOL doll fashion show. Dylann was loving her best life with that!

Sunday we brought Jeremy to the airport so he could work for a week the rejoin us. The kids and I then walked around downtown Philly and looked around before returning to the Ronald McDonald House. Micah was able to join a 5 star Pokemon Go raid with some others and won a legendary Pokémon so he was pretty pumped about that.

Monday was cast number two. The place was so packed so we were there all day pretty much for a 940 appointment. She has a history of hating the cast saw but after a few minutes of nervousness she didn’t make a peep getting them removed. 

https://drive.google.com/uc?export=view&id=1zizOLgDV9iIviAbcStTK5LOAxCYdgCUQ

That night we played with friends at the Ronald McDonald House and was part of an improv story show.

https://drive.google.com/uc?export=view&id=1tMm52fH_XYBZf_b2l8_zMwYHkiKhuWzL

https://drive.google.com/uc?export=view&id=1BoN8tZ9MGYG9cSfuxoglSAvs5vo15Zv2

Tuesday we decided we needed a little R and R. The kids and I went to Connecticut and stayed in a little beach cottage for a few nights. The town was so cute. We sat on the beach, watched movies, and rested.

https://drive.google.com/uc?export=view&id=1zhL0l6RrLGNAWDvT4eTWk_OB4AMrTMfq

Friday morning - cast change again! This time we were in and out and had minimal nervousness from Dylann. She likes her pink casts! That color has been the only constant.

https://drive.google.com/uc?export=view&id=1_CyVacV_lvd1RDlJml5kDAWJ-JOalKPv

Then went to pick up daddy at the airport!  Overall things have been going better then expected. Dylann is such a trooper and hasn’t had any issues with the casts. Micah’s been a big help- most of the time 😜. We’ve mixed in some fun so they’re hanging in there. Micah’s pretty homesick.  I did forget how the public responded to casts as it’s been a few years since she’s had them. Lots of stares, looks of sorrow, comments like “look at the poor girl”.  Those that actually talked tous have asked how she broke her legs, and prayed for her to have a speedy recovery.  I should be used to this by now but it doesn’t really seem to get easier. One mom carried around handouts about the condition to spread awareness and just gave them out as this happened to raise awareness and not have to retell the story each time. I like that andvthinking about following suit.  

We’re here for another week or so. We’re going to tour NYC for a day the hoping to get back in Ronald McDonald House. One more cast change left, a surgery next Wednesday on her ankles for an Achilles tenotomy. Depending on her recovery then we will start the drive back home!