Our next step in Miss Dylann's AMC journey

It's been a long time since I posted an update on Dylann's AMC journey.  Mostly this has been due to not too much going on due to her beloved MD leaving the Shriners Philadelphia last summer.  This has left us in a period of transition as we waited to see where he was going to end up so we could continue supporting her needs around her knees and ankles in particular.    

This has been a challenging time to not have his support.  About a year ago she dislocated and broke her elbow on a trampoline and we had to quickly find a local orthopedist to support her casting and surgery needed.  She has also grown out of her leg braces and had one brace that continued to have an issue with the lock leading us to need multiple trips to local orthotists last Spring to keep her ambulation support.  We did find a local orthotist in Waconia that we love and he helped us get exact replicas of her Shriners braces this Summer but just a bit bigger.  As we worked through all of that, it has been weighing on me what to do next for her knee and ankle support.  If we had continued to work with the Shriners Philadelphia, Dylann would have had a surgery on her knee this last summer and more casting on her feet to get them back to flat to the ground.  As of the time of this post, Dr van Bosse has not yet started taking patients at a new location and some of the surgery's being discussed for Dylann are time sensitive to complete while she is still growing.  

Earlier this year, I made a decision to start looking around for another MD in the event Dr van Bosse was not up and running by this summer.  We met with two doctors in MN that were new since we tried to find a local doctor 7 years ago for her. One of them said the same things we heard then which was to remove bones and do very invasive things as part of their treatment plan. The other one did agree to follow Dr van Bosse’s treatment plan as is even though he would do a few things differently and was ready to perform the surgery this summer.  We then got notified late Spring that he was leaving Mpls Shriners which left us back at square 1. 

At that time, I made the tough decision to schedule a consult with a provider who is very well known in the AMC community and specifically around knee interventions.  Many of the children with AMC we know across the country who do not see Dr van Bosse, see this other provider in Florida.  We had a consult with him in July and follow up in August to hear his treatment recommendations which while a little different than what our prior MD had suggested, have shown to have great outcomes for increased knee range of motion in kids with similar knee contractures to Dylann. After much contemplation and lots of discussion with Dylann, we decided to schedule surgery with him for 12/6.  This was not an easy decision for a lot of reasons; but in particular because we love her prior MD and credit all the progress she has made to him. It truly came down to the timing of weighing out waiting for him and her age with the difference in this surgery.  I also do not prefer to continue to travel out of state for cares in general; especially considering changing to a much more expensive city from Philadelphia and what this means financially.  All that to say, we have and will continue to always do what is the best for Dylann and feel like in this case, it is.

So, what does this mean logistically? It means Dylann and I leave one week from today to temporarily reside in West Palm Beach Florida for 6 weeks. Her surgery is scheduled for Tuesday 12/6 then she has daily physical therapy for the remaining time which is an important piece to her rehab to get the most knee range of motion possible.  We will be flying home for 5 days to spend Christmas here in MN but will predominantly remain in FL most of December and January.

Overall, Dylann is doing ok with this upcoming plan.  She has some nerves and is excited to see what this means for her continuing to need her tall brace to walk.  She is sad to miss a number of the Christmas things we usually enjoy as a family but being able to fly home for the actual Holidays helped her feel better about that. She is feeling sad to be away from her friends and family.    

For me, it is going to be a lot and this will be painful for her which is never easy to see your child in pain.  I find the ocean to be my calm happy place so that is helpful to be in a city that allows us to come and go from there as we please. I am so thankful to have such a wonderful employer to support me in supporting Dylann while still working as I can. I am also so thankful for friends and family who are going to be coming and going to help support and entertain us down there. 

I have been getting asked how friends and family can support us during this time – one thing that comes to mind is to send any cards or notes to Dylann during our time so she has fun things to open and knows people are thinking about her.  We will be staying at the Florida version of a Ronald McDonald house for the first three weeks then in an apartment for the second three weeks. I put the address below for how to reach her from 12/4 to 12/21 before we fly back for a short Christmas visit. Things can also be sent via email to dylannsdash@yahoo.com

• Dylann Paradeis 
• Quantum House
• 987 45th Street, West Palm Beach, FL  33407

I will plan to keep this updated more regularly as well when we are down there.

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!

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! 🐶

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. 

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

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.

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.

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!

13th and 14th visit to Philly

I just realized I never wrote about our last trip either. I few weeks before Thanksgiving Dylann, Nichole, and I went for a long weekend. It was eventful!

I was trying to save PTO days so I could take all Christmas week off so decided to book a Thursday evening flight for our Friday appt. This meant no Ronald McDonald House because you have to arrive by 8. Then I realized I wasn’t comfortable with a midnight cab ride with a preschooler. So I booked a car service to pick us up and bring us to our hotel. Ended up being costly decision lol.

We arrived at the hotel to find out we had no room. So it’s 1am and we’re sitting in the lobby finding us somewhere else. Mind you I do lots of research when I travel so I wanted to be in this part of the city to be in safe walking area for things to do. Now that’s out the window. We end up being put in a cab anyways to a hotel a few miles away. The one positive is they paid that night if my room.

Friday we had a quick appointment. Mostly check up and brace fitting. Then that night we did some boutique shopping and had a girls night. This hotel was on a side of town I’d wanted to try but hadn’t so ended up being a nice shift.

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.

Next philly trip

It’s been a bit since I posted. Things are going pretty well. Dylann had a second set of X-rays to check on her knee and that knee is straight! We go back to Philly in three weeks for an outpatient visit and then surgery to remove the 8 plates in her knee and pin in her hip. Should be a same day surgery... fingers crossed.

She’s been walking just a little bit without her braces but doesn’t seem all that interested in that at this point.  She also now hates sleeping in her braces so we don’t get much sleep around here. She screams in pain between 10-12 each night and is not consolable. Hoping the MD has more ideas when we are there. The biggest issue is her knee needs to stay stretched out otherwise the chances of her regressing back to bent knee when she’s older is high. She’s just not having it and even says she doesn’t care if she needs more surgery cause of it.

Otherwise that’s about it. Just working on planning this years Dash!