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.
