Post op visit Dec 2017

Got to Philly yesterday and we're lucky again to get a room at the Ronald McDonald house! We saw our dear friend Katee!

This morning we got up bright and early to get the cast off. 

The saw scares her pretty significantly at this point so it was a rough hour Miss Dylann getting it off. But look at those beautiful straight feetsies!

Next we tried on our new braces the got a hip X-ray. Then we waited to see our MD. He said her hip looks great. It's healing  nicely and she was given clearance to weight bare in braces!!

He said her right knee responded so well to the procedure that her leg is almost straight. He plans to take the plate blocking the growth plate out in 4 months!!  She does still complain it hurts.

The MD had her do some standing to see how the braces fit and how things were looking. The only sad part to hear is she has to sleep in these tall braces for years to keep her knee and feet in position. That's going to be a fight.

She had some soreness tonight so stayed in her wheelchair most of the night. Finally she agreed right before bed to let me soak her feet and cut her nails. She then asked to walk and managed to walk like 10 steps independently again!! She continues to amaze me everyday!!!

Surgery Day Philly Nov 2017

I realized that I posted all Dylanns updates on Facebook but not on here. I'm hoping someday Dylann will find it helpful to look back on all these events so decided to summarize how things went.

Surgery was on 11/1. She had a left hip osteotomy, right knee 8plates, removal of left femur plates, bilateral knee tendon releases, and bilateral Achilles tenotomies. The surgery took 4 hours but with all the prep and other things, about 8 from when she went back to when we saw her in ICU. She got an epidural for pain management so spent the first two days in the ICU. He said the surgery went great, her left knee straightened with just tendon releases and then the right improved a ton as well but did need the plates.

First day went just fine. She mostly slept and pain seemed controlled for the most part. 

Second evening she had a pretty large meltdown that took Valium and three of us to calm her. She was upset we couldn't hold her and complained about her knee. Her O2 plummeted from there so she had to spend the night on oxygen.

Friday they worked to get her off the epidural and she had intermittent pain. We moved out of ICU onto the 5th floor in a room for 4. First night we didn't have a roommate. Her O2 still was falling too low so she spent another night On the o2. She also started getting fevers. 

Saturday we got her off the oxygen but her fevers kept happening once a day and we couldn't leave until fever free of 24 hours. We were finally discharged Monday at 12 just in time to catch our 4pm flight. The plane ride went really well!

Continued Philly Fun

Dylann and I had a nice time this weekend. Saturday we found a festive in downtown Philly and went trick or treating. 

What a sweet Moana :)

Sunday we hung with our new friend Katee. We watched Moana in the theater and did lots of playing at the Ronald McDonald house.

Today was time to get our last foot cast! We got to be in the fancy cast room!

Cast removal was traumatic again but then got some time to enjoy my legs castless for a bit. Look at those straight feetsies! 😍

Went back to purple/pink casts.

Spent the evening playing with Katee and going to music therapy. Both our besties are gone now so Dylann and I are on our own tomorrow. 

Id be lying if I said I'm not insanely nervous about Wednesday. She's been asking lots of questions about it and I'm sad to have her be in such pain again. Keep her in your thoughts and prayers. She'll be in surgery probably from 7:30am to 2 or 3pm. Thanks so much to folks who have sent her things. We know she's very loved. 😍 Sweetest little one.

Start off to 10th Trip to Philadelphia

It's safe to say at this point that Dylann and I are really good at travelling to Philadelphia. Most of what I had wanted done prior to getting prepared was done, so that always helps. The only main hiccup was getting her rental reclining wheelchair. They told me the week before we left that I wouldn't get it on time after a number of mishaps on their end. I decided to try to find another way and borrowed some options from neighbors of mine. They ended up calling me a few days before I left and said they were going to deliver it that day or the next day and were going to call me back with the time. A few hours later my neighbor was calling me as she attempted to go sign for it and they wouldn't let her and they hadn't called me back with the time so I was still in at work a half hour away. I raced home to find out that somehow our DME company had ordered us an entire medical set up - bed that could raise her feet and/or head, a lift to get her out of bed as well as up and down stairs, a bathroom set up and the wrong size wheelchair. So that all got sent back and was a giant waste of my time. They aren't the most organized place I have worked with.

Anyways, we were able to use what we had for now and can make adjustments later if needed. My aunt and uncle brought us to the airport Thursday. We had a pretty easy flight and Dylann did great. 

 The car rental went flawless and we decided, for the first time, to use Thrifty and the Shriners contact to help coordinate it. I ended up getting $100 off, an upgrade to an SUV for free, and a free car seat for the time. We got in the Ronald McDonald House which is always such a blessing for the amount of stress being there is alleviated. Dylann as usual was spoiled when we got here last night with toys and volunteers playing with her!

Casting went fairly well. She now is very upset with the saw sound so that's a pretty rough 15 minutes for her to get them off. Her new doll kept her happy and she picked new colors!  Sounds like her surgery will be about 6-7 hours next Wednesday.

After casting we ran lots of errands to bank, post office, and grocery store. When we got back to the Ronald McDonald house house just a bit ago we met a new friend who sees our MD. He was in the cast that Dylanns going to be in next week so we went over to chat. He actually had surgery two days ago and is already discharged so that initially made me feel relieved. Well the more I talked to Mom it sounds like it's been kind of horrible. He's still in a ton of pain and begging to go get the cast off 😩. So now I'm nervous again. They are from Singapore and staying here for the month he's in it.  Poor kiddo did not look happy. 

So now Dyl is resting then wants to play with her buddy who we found out is coming today. We plan to do some Halloween events this weekend and relax. Weather is beautiful at 70 and sunny!

Also, lots of people have been asking where they can send Dyl a card so I'll just post our address on here as well. Our plan right now is to head back Monday 11/6.

Phila Ronald McDonald house

ATTN Dylann paradeis 

100 East Erie Street    Room 204

Philadelphia, PA 19134

Halfway through Casts

Tuesday marked the 4th cast meaning we're halfway done with serial casting! Dylann and I went down to Shriners to change her casts. She was less happy then in Philly. Mostly she hates the saw so once ther child life specialist got her distracted, it went ok. She stuck with the puppy paws for one more week. The MD said her one foot was making good progress, the other one medium... that's what I was expecting.

Most of the upcoming trip is planned. We leave in two weeks from today and are there about two weeks. Dyl and I are going first then Jeremy will join us 10/31. Her surgery is 7:30am on wed 11/1. I anticipate she'll be in there for 6-8 hours so that day is going to be horrible. Hopefully only 2-3 nights in the hospital after. The only main thing left to get done is her wheelchair here that we need to rent... the DME provider is being difficult. I'm hoping to have it so I can just fly that one with me instead of the having two chairs to bring back. Not sure the timing is going to work at this point.   Oh and Dylann and I need a ride to the airport 10/26 getting there at 11 if anyone can do that! Otherwise we're ready as we are going to be.

I did get the call this week that her cast removal will be 12/15 at 8:30am!!! So 6 weeks in cast is set and she hopefully can enjoy Christmas cast and pain free! I was worried 😩 the holidays would add weeks on.

She continues to rock all this... the rest of us probably get C+s 😳.

A week in..

.to our 3-4 month journey. Overall things have gone well since we got home Tuesday. Wednesday morning we had an IEP meeting and then she was able to join her friends back at preschool!

Thursday daddy took her down to get her casts changed. Sounds like this was not a good experience for anyone. She's terrified now of the saw to remove the casts. The Mpls Shriners MD had to take a break to let her calm as nothing was helping. They ended up having the social worker come and play with her to keep her distracted. This ended up working and once the casts came off she was her normal perky self. I love the colors she picked... blue puppy paws. Her feet are looking good after 3 casts.

Today she went and saw her favorite Angel for her CST appointment. This always makes her in a better space and can't believe we've been seeming Angel since Dyl was 5 days old! We drive to Lindstrom now to keep things going!

Dylann is sleeping better and complaining of her knee less. Her temperament is so amazing! She spent some time today taking selfies with her grandma and grandpa.

 

Finalized next trip plans so things are falling into place. Delta continues to provide top notch customer service for our needs. Got discounted fares with medical waivers to change anything we need last minute. Plus we now get the TMA Care program that individually helps those with disabilities get through check points so no more stress around that. Got a car booked then got connected with a manager who is giving us a Shriners discount and lots of free upgrades and perks. Finalized with a DME company today for her rental reclining wheelchair that will be here in time to bring with us there. So, today, felt like things were coming together. The last three days have felt like 30 though so this momma plans to sleep 😴 til noon tomorrow...

Nineth Philadelphia Trip

Just finishing up our 9th trip to Philly in just over two years. Things are going better than expected.  Friday was the start of Dylanns 8 ponseti casts to get her feet back in better position. We do two casts here then home to MN for three weeks/ 4 casts at Mpls Shriners the back out here10/26  for two more and surgery.

Here are some pics before casting on Friday morning. She loves the Ronald McDonald House!

We had our appt early Friday and things were running on time! She was a complete angel 😇 during casts, just laying and watching tv. The dr and I talked about her surgery a bit. We've been debating about flying or driving home and he helped with questions around that. He talked again about how her shins are twisted on both sides. Her ankle bones are on front and back versus the sides. He may decide to untwist these during surgery next month depending how much her feet correct during this casting. We talked about the knee plans  and that both knees should fully straighten 6-24 months after the surgery. They may lose a little of the bend ability as the arc of motion stays the same, it just realigns. I didn't realize this but Dylann actually has a good amount of motion in both knees, one just doesn't straighten. So this will help her work towards walking independently without braces and hopefully won't lose too much bend as the trade off. She will need a lot of rehab post cast. I learned the time after the cast from surgery is worse than the time in it. 

Here's a few pics from day one.

First night sleep was pretty restless, mostly cause Dylann is a belly sleeper and was getting frustrated that she couldn't roll around as much. She slept all night though so way better than expected! 

Saturday we went to the Camden Aquarium and to the mall to have some fun. Dylann made friends at the RMH.

Sunday we went to a park and ate at WAhlburgers and played with our new friend Owen at the house. Sleeping continued to be rough as nights went on for Dyl. She's mostly complaining about her left knee and medicine doesn't seem to help.

Monday we had our second appointment. It was a long day with a three hour wait until our casting. Dylann had a very sore knee so was pretty tearful during casting this evening. Will see how tonight sleeping goes. Tomorrow we get up early and head back to MN for three weeks then back here for two. She went for two toned tonight!

This girl is so amazing!

Special Needs Mom Thoughts - 70 days until surgery

Most days I don't even think about Dylanns AMC anymore. She's come so far and it just becomes part of daily routines. Today for some reason things bothered me. I dropped her off at daycare this morning and on the way in she's walking in her braces while I push her walker and she says, "mom, I don't need my walker anymore, I can walk now. Let's give it to someone who needs help walking."

I then watched her go into her room and try so hard to chase around her girlfriends in the class. I am so proud of her determination and at the same time I felt so sad. She was always behind them so didn't catch up to the group playing but looked elated to be doing it. It was such a weird mixture of feeling so proud and such heartache at the same time.  I hope she always feels included but I know that's not going to be the case.  She's so excited to be independent and doesn't understand the road she starts next month having to start all over.

I'm in several different Facebook support groups for Arthrogryposis; some for moms only, some for any connection to the condition. There was a very heated discussion yesterday about if AMC moms can really understand what it's like to have AMC and ultimately that we really never will. Some adult AMCers went on to say how selfish we are for putting our kids through all these procedures nowadays when they all managed without them. I can't shake that discussion. I mean I trust my doctor 100% but his goal is to get her to walk independently without KAFOs. But would that be Dylanns goal if she could decide this? Are we putting our kids through too much pain when's she's perfect and happy right now? It's so hard to know if you're making the right decisions sometimes. I guess I have never thought of myself as selfish.  So those comments struck a chord with me. I felt that dichotomy this morning when she walked off. How do you know you're doing the right thing? This preparation just feels so much worse than last time.

Most days I don't even think about Dylanns AMC anymore. Today wasn't those days.

A date is set

We got the call today. Dylanns next surgery is set up.

It's weird because I've been waiting and wanting it set up but after the call today I'm not feeling relieved, I'm actually feeling sad and worried again.  It's going to be a long Fall/Winter for Miss Dylann.

The plan is this. We go to Philly for two sets of clubfeet casts 9/29 and 10/2. Then we come home and work with MPLS Shriners for a month doing another 4 casts here. Then back to Philly for casts 10/27 and 10/30 with surgery 11/1 so we will be there 1.5 weeks. These will be trips 9 and 10 in the last two years. So this year Halloween at the Ronald McDonald house but we should be back home for her birthday!

Dylanns surgery will be all day. She's having hardware removed from her left femur that remains from her last surgery. She is having a left pelvic osteotomy to help her hip stay in place ongoing by rounding out the socket. She's having 8 plates in her right knee to help her naturally straighten it while she grows over the next year, and she's having two heel tenotomies where they sever her heel cords to help with her clubfeet regression. I'm not totally clear on how long she'll remain then in her Petrie cast but likely 6-8 weeks. She'll look like below.

So we will be driving home and need to figure out how to get her around with her hips that wide. I'm hoping to add something to her wheelchair so she can still keep some independence and she can go to her preschool in that if she's up to it after recovering.

What I've learned about Dylann is she's so resilient; it's the rest of us I'm worried about 😜.  Hoping this is the last major deal for her and that her recovery is that much faster then two years ago when we did this whole thing.

Philly trip #8

Just finished up our appointment at Shriner's yesterday. I can't believe this is our 8th time coming here already. Each time we come feels like we never left.

We got in Thursday evening and grandma came along to keep us company. We got into the Ronald McDonald House which is always so relieving to be close to the hospital and be somewhere that Dylann loves. We also happened to arrive on the grand opening of the new playroom so she was beyond excited.

AND.. they dressed her like a super hero 

Our appointment was Friday morning and we were actually in and out pretty quickly. She had an X-ray, then met with the MD, then lots of fixes to her braces, then last check with the MD. She did great and didnt fuss once. 

Not much new to report. As expected, in 5- 6 months she will have her next and hopefully last major surgery. She needs one hip osteotomy to help her socket have more of a round shape, a plate removed from her left femur from last surgery, a growth plate surgery on her right knee to gain more extension, and both feet need club feet support so will have heel cord releases. She will need 6 weeks of casting before the surgery. So we will be spending a fair bit of time out here this Fall/Winter. I asked about recovery for someone who's already come so far and he said they do bounce back much quicker. He had her do some walking and said she'll be fully walking in no time! ❤️❤️❤️❤️

Then we came back to the RMH and played in the beautiful 80 and sunny day.

We also met some new friends! I finally met another family from MN who we knew through FB but had never met in person. We also met a few other families with AMC, one of which Dylann really really liked. It was a little 5 year old named Owen from Ohio who had the same walker as her so they played together most of the stay. She kept calling him her best friend :).

We're staying till Sunday actually so this morning we're heading to a hotel close to downtown and the airport and plan to hit up the NFL draft 🏉, enjoy the weather, and go swimming. Overall a nice trip!