Dylann 5 days old
Monday, January 9, 2023
Friday, December 30, 2022
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.
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! ❤️
Friday, December 9, 2022
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.
Tuesday, December 6, 2022
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 ♥️.
Friday, November 25, 2022
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 email@example.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.