Final stretch

 

Today marks two weeks since returning to Florida after Christmas. Micah came back with us for the first week. It was so nice to have him with us - we’ve been really missing him. He helped entertain Dylann for a few days so I could get some work in. They got to swim in the pool and we have the best shops and activities to walk to!

Therapy went pretty well that first week. She had 4 days of active sessions really focusing on strengthening her quad muscle in her right leg. By end of the week she started getting frustrated. She’s trying so hard to move her knee and do things she’s just not able to at this point. We see a few different therapists and one of them started questioning if she has enough quad muscle to progress. There was some confusing notes in her discharge summary that says she has no distal quad (above the knee) so they were questioning if she’s going to be able to gain enough to walk without braces. So we ended that week pretty sad and discouraged. I was wondering if any of this was even worth it. 

Jeremy came Thursday night before New Years so we were able to have a little fun that weekend. We went to the beach and hung in the pool, shopped, and saw some New Years fireworks.

New Years Day Jeremy and Micah went home but grandma came the night before for two weeks! She’s been so helpful to keep me sane :). Monday we had no work and therapy so we relaxed. Dylann started complaining of “heart burn” that day on and off a handful of times. By Tuesday she kept saying it and as we talked more about what heart burn felt like for her, she was having some sharp pains near her heart and lower ribs. She’s been having some GI/constipation stuff for the last year so my initial gut was it’s that and started her on a “clean out” Monday afternoon. That evening she was getting pretty worked up and scared thinking something was happening to her heart. Dylann is a very reliable person surrounding her medical needs so when she asked to go to the doctor at 9pm that night, we did. Not a fun situation when you’re far from all your doctors.

Luckily urgent care was quiet and they were so great. They did an exam and watched her vitals for a bit as well as took an X-ray of her lungs and stomach. Overall she looked great other then her tummy getting backed up again (as I suspected :) ). She calmed a little after the MD told her that her heart and lungs looked and sounded great - but the pain continued Wed and Thursday so she didn’t want to do much. It seemed to worsen with activity.

Last Thursday we saw her orthopedist again- some good and bad news :/. I asked about her quad and what’s realistic especially since she’s not ever used it being in KAFOs her whole life. He looked at her muscle function and told me that he feels confident she can gain strength there! He confirmed it’s going to take months of hard work beyond what is done while in Florida, which we will do and wasn’t an issue- just wanted to confirm we have realistic goals. He seemed very happy with her leg progress.

When he heard the update on her chest/rib pain, things took a left. He said he wanted to check her spinal cord. He had asked me to send her MRI disc she had done when she was 1 so he could make sure there is no tethering or other nerve etc issues. I tried for weeks and they still hadn’t received it. So after he heard about the new pain he says he wanted an updated MRI of her spine asap. This also didn’t move us to discussing when we can leave which I was hoping to make a plan for in next week or two. :(

So Friday our plans shifted to getting her a MRI. We had to cancel therapy to get there and then sat and waited two hours. We did it unsedated so wasn’t Dylanns favorite hour. They let me stay in there but she was pretty nervous and scared. She was able to stay calm enough to lay there perfectly still for 70 minutes. She said she kept thinking of shopping, the beach, and ice cream :). So….. we did all three of those over this last weekend. I’m amazed every day at home amazingly strong she is.

Friday she didn’t have any more pain. Saturday she did for a bit in the evening but it was lower in her belly. She didn’t have it yesterday or today. Yeah!!! She finished her “clean out” so I’m still feeling pretty confident that was the issue but sure resulted in a ton of extra medical visits, time, and costs. Thank goodness Grandma was here to help with the crazy last week. Hopefully she isn’t too traumatized by our crazy life.

We haven’t heard the outcome of the MRI as of yet from the doctor but I read the report in her online chart and it reads all normal. Hoping he feels the same. PT went well today - they spent a lot of time walking and stepping with her KAFO on (and sometimes unlocked). We see the MD on Thursday again and we’re really hoping we can leave on Friday. Dylann and I are both over it and not functioning at our best. Since the PT/rehab is going to need to continue for significant time we’d rather do at home if an extra week or two here isn’t going to move her significantly farther. Send warm thoughts that we get to start the drive home on Friday! We’re ready.

First few weeks and Christmas

We just hit our halfway mark of being down here in Florida!

For the week and a half after discharge we did daily PT. The main goal is to keep her knee moving from full extension to at least 90 degrees flexion/bent. She was able to bend farther then that pre surgery which she should gain all back over time. She has pretty much met this since her third session! Her knee does tighten up through the day and her quads are not yet strong enough to keep the knee straight on her own. So we’ve been doing our own home pT for another 1-2 times a day on top of clinic.

The house where we were staying until Christmas had so many fun activities! She saw Santa 4 times, held baby Kangaroos, made 10 bags of slime, made cookies and gingerbread houses, and lots of art projects. She also met some new friends from Ohio and South Carolina who we did some fun things with as well like go to turtle sanctuary and dress up like a Rainbow High doll. Grandma was here for 5 days and we went and saw the Sandi Christmas tree and hung out down town. 

She managed to keep up on her school work! Mom, on the other hand, is a bit behind. She also LOVED to check the mail and email each day. She got so many lovely cards notes and packages. Thank you to all of you who took the time to send things! It made her day.

Thursday 12/22 we saw the doctor for her post op appointment. He said that her leg looked straight, was healing good, and she could move to active PT! She needs to spend a lot of time strengthening her quad muscles so that’ll be our focus of last 4 weeks.  

We then luckily caught a flight to Minnesota Thursday night to home in time for Christmas. We were not sure that was going to happen with the weather so Dylann was pretty happy to get home for 4 days!

We had a great Christmas then headed back to Florida Monday 12/26 evening. We moved into an apartment since returning so no longer have the same mailing address. Trying to see if we have options as I know some of you have asked for it. We do have access to a pool so Dylanns pretty happy! ❤️ 

Post surgery updates

 

It’s been a busy few days. Dylanns first 6 hours after surgery was quiet. She was very sleepy and it took all her energy to even speak.  Mid afternoon she started to perk up a little and ate some lunch. She had some more moderate pain before bed (outside of that was pretty controlled) so she took some stronger meds and was pain free for rest of the night. We shared her bed and got a little sleep.

Wednesday she was back to herself. PT came and helped us get her up in a walker which she was able to do independently. Her leg is in a long immobilizer brace and she should be cleared to stand/walk on it in a few days, although she’s not excited about that :).

We were cleared for discharge around lunch and left a few hours after. This was the quickest she’s recovered post surgery! Her other major surgeries she was inpatient 3-5 nights with different issues like fevers or oxygen support needed. So we weren’t expecting to get out so soon.

She rested the rest of the day in bed and was finally able to have her ice cream! Got her favorite at Culver’s. She had a spike in pain before bed but after some medicine she hasn’t taken any more in over 24 hours now.

Yesterday was pretty good. She had some nausea in the morning and was sick a few times. Dad left to go home so I think some it was her nerves. Grandma gets here Saturday. She got some mail at the house which made her very excited and happy. Now we’re on an hourly mail check schedule LOL!

After dinner my full Dylann was back. She was getting around in her walker. She was making jokes and happy. She drew me this sweet picture ⬇️

She had a virtual piano lesson with her music teacher and wrote a song.

Before bed we removed her dressing over her knee as instructed. She was very nervous about this in case her knee moved anticipating the pain. There’s minimal swelling and all the coverings looked great. She decided on her own to try to move it and was able to straighten and bend it just a little on her own! She said it felt tight but didn’t hurt so is a little less scared for Saturdays first PT session.

I continue to be amazed at how strong and resilient Miss Dylann is. ♥️♥️♥️ Today/Friday we hope to get outside and enjoy the 80 degree weather for a bit between activities. 

First few days of FL update

 

Florida update!

We left Friday and it took two days to get here. We made it to Illinois the first night and had a nice comfy hotel. Second night we got to just past Chattanooga TN and didn’t quite have the same experience of hotel. Lots of reasons but Dylanns only request was to swim in a pool before surgery so we made sure it had a good one. We stopped early, checked in, ordered dinner, got changed and headed to the pool just to learn it was closed. 😢. She was so sad. We told her we’d make it up to her on Monday after her appointments and go to an outdoor public pool in west palm beach!

Sunday we arrived about 630 and got all unpacked and settled. Monday she had her pre op which went well. We then tried to find our pool for pool day. Tried 5 pools and apparently Mondays are not the day to find a pool as they’re closed out here. Fail #2. We did go spend a few hours at the ocean instead ♥️.

Today was surgery day. We got there early - 6 am - for 8 am surgery. Things went well. Her surgeon said her knee is straight (was the goal) and he didn’t have to shorten the bone like he thought he might. This is good news from a recovery standpoint - less pain and recovery but also means she can start standing on it much sooner. That was a win! She was pretty tired for awhile after she woke up but has perked up tonight. She’s almost back to herself. It’s going to be a long 6 weeks of rehab to keep her knee moving as much as possible. 

Today her only request was a M and M mixer from McDonald’s. I went to two and apparently west palm beach McDonald’s ice cream machines are down. 0 for 3 this week on Dylanns wish list 😢.

If you want to reach her between now and 12/22:

Email - dylannsdash@yahoo.com

Mail 

Dylann Paradeis 

Quantum House 

987 45th Street, West Palm Beach, FL  33407

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! 🐶