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!

Philly trip #7

Just wrapping up the day after seeing our MD. We had the early appointments which was nice so we actually got out of there at 230 today.  

Got her new braces at 830, then X-ray, then waited for her appointment until about 11. Played a little tea party while we waited.

She got a new "buddy" from the X-ray tech.

She got some new pink braces! She must have really liked pink in June when we ordered these 😜.

The appointment was hard. Dylanns got more work to do. 😞  Her feet are still regressing but not too fast. He's hoping to keep the next casts until a year from now.  Her knees are the same, same plan. In a year she'll have her knee surgery where he will stop the growth plates so it can straighten out, then remove them. Her hip was disappointing. It is in and it is growing and progressing...but, the socket is not shaped like it should be by now to keep it in. He wants to do another surgery in a year to curve the socket then into a 6 week Petrie cast like below.😬. He's going to think more about timing but potentially it could mean an all day surgery of hip, both knees, and femur plate removal or splitting these into two so this cast x2- once for hip and once for knees. 

I'm at the point I might just move out here.  He's talking more stuff he wants to do after "a few years down the line." I was hoping we'd graduate when she was 5 😂. Not so much.

Anyways, just trying to digest it all. Dylanns exhausted and passed out at 739...so I'm going to read a bit.. The new Jodi Picoult book is out !! 😍 

Think of and pray for this little one.

 

October updates

Hey all!

Not too much to update this month so far. We do go back to Philly in three weeks so I'll update more progress then.

We've been working hard to get Dylann walking in her walker more then also being able to get up in her tall braces. She starts preschool on 11/15 so we want her to be as independent as possible. Can you believe she's three in a month!?! A preschooler, wow!  We get to see her room Friday to prepare.

I also decided 6 months ago to see if we could get more services and help through the county. I had been avoiding it for a few reasons: 1) I kept being told she wasn't "disabled enough" by other moms, 2) it's a lot of work and energy that I wasn't sure I had in me to end up getting denied, and 3) there's something that feels final about getting a determination that states you are certified disabled that I wasn't sure I wanted to do.  Our pediatrician encouraged us to do it in March. He said he was surprised I hadn't thought about it sooner and that he'd like to see us get some help. Lol I must have looked defeated or tires that day :)!  Well after 6 months of paperwork and advocating and paperwork and waiting and paperwork, the MN state medical review board did determine she met their guidelines for disability.

So, will see what else we can get to help Miss Dylann keep progressing and keep being awesome!

I'll post more after Philly! 

End of summer updates

I noticed it had been awhile since I posted so wanted to give an update but not too much is new.

Dylann continues to go to twice a week physical therapy and is working very very hard to stand by herself and try to take some steps. She finally got her walker through insurance so we've been taking it to the mall and to daycare so she can work to get around on her own more and more.

She continues to see Angel which Dylann loves and asks to go to each week. "Mom can we see Angel to rub my back pease."  We spent a few months seeing a chiropractor as well to work on her back unevenness.

We've been working with the school district to get her on an IEP and she will start preschool mid November! It's twice a week for three hours in a regular classroom setting.

We go back to Philly Thursday 10/27 for check up, new braces, and X-rays. Dyl and I will be braving it alone but it'll be a short trip with a return flight Saturday.

We had our third annual Dylann's Dash event a few weeks ago and was the most successful yet! We raised about $7500 above the cost of the event and gave out two scholarships!! The weather almost caused some issues but right when folks started coming the sun came out and stayed the whole time. Magic Arms and AMCSI will be recipients of this money and next year I plan to hit 10,000 and add Shriners to our list!

Happy end of summer to everyone!