Dylann 5 days old

Dylann 5 days old

Saturday, August 10, 2019

15th Philly Trip

Just over halfway done! This is the going to be the longest visit and was the first time we drove. Dylann’s feet were started by to turn in again. This is common for arthrogrypotic feet. As the child grows the feet want to back to their clubbed position. This is corrected by doing ponseti casting which is a series of casts changed every 4-7 days while slowly moving into the right position. An average set is about 8 casts. Dylann just needed 4 which was good news as that meant a 2.5 week trip in stead of 4. After the casts then she has a minor surgery to lengthen her Achilles’ tendon and pull her heel down. That is scheduled for next Wed. We left MN Wednesday 7/31 in the afternoon and made it almost halfway to Indiana. We arrived in Philly Thursday evening and luckily got into the Ronald McDonald House. That always makes things much easier. Dylann has her first cast last Friday. She did amazing and left the room walking on them. She’s had no pain. This is a drastic difference from 2 years ago when she was up crying all night. Saturday we went and got some school clothes at King of Prussia mall. There happened to be a LOL doll fashion show. Dylann was loving her best life with that!

Sunday we brought Jeremy to the airport so he could work for a week the rejoin us. The kids and I then walked around downtown Philly and looked around before returning to the Ronald McDonald House. Micah was able to join a 5 star Pokemon Go raid with some others and won a legendary Pokรฉmon so he was pretty pumped about that.

Monday was cast number two. The place was so packed so we were there all day pretty much for a 940 appointment. She has a history of hating the cast saw but after a few minutes of nervousness she didn’t make a peep getting them removed. 

https://drive.google.com/uc?export=view&id=1zizOLgDV9iIviAbcStTK5LOAxCYdgCUQ

That night we played with friends at the Ronald McDonald House and was part of an improv story show.

https://drive.google.com/uc?export=view&id=1tMm52fH_XYBZf_b2l8_zMwYHkiKhuWzL

https://drive.google.com/uc?export=view&id=1BoN8tZ9MGYG9cSfuxoglSAvs5vo15Zv2

Tuesday we decided we needed a little R and R. The kids and I went to Connecticut and stayed in a little beach cottage for a few nights. The town was so cute. We sat on the beach, watched movies, and rested.

https://drive.google.com/uc?export=view&id=1zhL0l6RrLGNAWDvT4eTWk_OB4AMrTMfq

Friday morning - cast change again! This time we were in and out and had minimal nervousness from Dylann. She likes her pink casts! That color has been the only constant.

https://drive.google.com/uc?export=view&id=1_CyVacV_lvd1RDlJml5kDAWJ-JOalKPv

Then went to pick up daddy at the airport!  Overall things have been going better then expected. Dylann is such a trooper and hasn’t had any issues with the casts. Micah’s been a big help- most of the time ๐Ÿ˜œ. We’ve mixed in some fun so they’re hanging in there. Micah’s pretty homesick.  I did forget how the public responded to casts as it’s been a few years since she’s had them. Lots of stares, looks of sorrow, comments like “look at the poor girl”.  Those that actually talked tous have asked how she broke her legs, and prayed for her to have a speedy recovery.  I should be used to this by now but it doesn’t really seem to get easier. One mom carried around handouts about the condition to spread awareness and just gave them out as this happened to raise awareness and not have to retell the story each time. I like that andvthinking about following suit.  

We’re here for another week or so. We’re going to tour NYC for a day the hoping to get back in Ronald McDonald House. One more cast change left, a surgery next Wednesday on her ankles for an Achilles tenotomy. Depending on her recovery then we will start the drive back home!

Monday, January 28, 2019

13th and 14th visit to Philly

I just realized I never wrote about our last trip either. I few weeks before Thanksgiving Dylann, Nichole, and I went for a long weekend. It was eventful!


I was trying to save PTO days so I could take all Christmas week off so decided to book a Thursday evening flight for our Friday appt. This meant no Ronald McDonald House because you have to arrive by 8. Then I realized I wasn’t comfortable with a midnight cab ride with a preschooler. So I booked a car service to pick us up and bring us to our hotel. Ended up being costly decision lol.


We arrived at the hotel to find out we had no room. So it’s 1am and we’re sitting in the lobby finding us somewhere else. Mind you I do lots of research when I travel so I wanted to be in this part of the city to be in safe walking area for things to do. Now that’s out the window. We end up being put in a cab anyways to a hotel a few miles away. The one positive is they paid that night if my room.


Friday we had a quick appointment. Mostly check up and brace fitting. Then that night we did some boutique shopping and had a girls night. This hotel was on a side of town I’d wanted to try but hadn’t so ended up being a nice shift.



Tuesday, June 26, 2018

12th visit to Philly 

Jeremy and I were trying to figure out how many trips to Philly there’s been so I went back and counted. Twelve. In three years almost to the day. Our first trip was 4th of July weekend 2015. Here are some pics from back then.


I remember thinking back then I had no idea how we were going to make it work to have a physician halfway across the county from us. But, we just made it work and here we are...for the 12th time.

We saw Dr vanBosse Friday for an office visit and X-rays. He had Dylann do a lot of walking in her tall and short braces. Since Dylann doesn’t love to unlock her tall ones to practice walking, the next time she needs braces remade (prob 6-9 months) she’s going to get GRAFOs- which are shorter braces but help with the knee extension when she walks.  Pic below. She did decide to walk a little with her tall ones unlocked after her appt.

He spent some time trying to pep talk her into wearing her braces all night.  The risk is big by not sleeping in them as her knee could start to develop a bending contracture again after all this work.  She ignored most of it and told him she didn’t like them LOL.  She has however slept in them since Friday which hasn’t happened in 4 months! Will see if this keeps up. We’ve tried everything.

He looked at her hip progress. Overall he felt things looked good. Her socket is starting to round out nicely from her surgery. He said the space between the socket and femur head is a little wider than her other one however.  That might mean in a few years he will want to do a third surgery. ๐Ÿ˜ณ  I didn’t even ask questions cause I’m honestly not sure we’re in for another one. I’d really need to understand what we’re gaining and risks of not doing it. It does not seem worth it unless it prevents long term major issues.. and I mean major.

We talked a little about Thursday, (tomorrow). Tomorrow Dylann is having another surgery. This time it’s to remove the pin in her hip and the 8 plates from her right knee. Should be a day surgery but Dylann likes to spike fevers after surgeries so not sure. Sounds like little to no pain ... hoping that’s true. We’re just hanging at the Ronald McDonald house watching a movie. Check in time is 6:30am for surgery. Send her some good thoughts tomorrow!


Also remember Saturday is AMC Awareness Day! Wear your blue and tag us on Facebook.

Wednesday, May 30, 2018

Next philly trip

It’s been a bit since I posted. Things are going pretty well. Dylann had a second set of X-rays to check on her knee and that knee is straight! We go back to Philly in three weeks for an outpatient visit and then surgery to remove the 8 plates in her knee and pin in her hip. Should be a same day surgery... fingers crossed.

She’s been walking just a little bit without her braces but doesn’t seem all that interested in that at this point.  She also now hates sleeping in her braces so we don’t get much sleep around here. She screams in pain between 10-12 each night and is not consolable. Hoping the MD has more ideas when we are there. The biggest issue is her knee needs to stay stretched out otherwise the chances of her regressing back to bent knee when she’s older is high. She’s just not having it and even says she doesn’t care if she needs more surgery cause of it.

Otherwise that’s about it. Just working on planning this years Dash!

Monday, January 29, 2018

Updates and special needs parenting vulnerability post

Dylann is doing great. I can't believe Thursday I can say it's three months post op! She's walking almost all day long in her KAFOs with short breaks and some use of her walker. We are doing twice a week physical therapy to work on regaining her bending ability in her knees that she lost while being casted and to start strengthing her hips and thighs. We have a long way to go but she's making great strides! I'm so grateful for my work that has supported me in working from home close to full time. I have a PCA who helps Dylann while I work but allows me to be much more available at home and it is helping make everything feel much more manageable. Being able to see Dylann more over lunch times and before and after work has managed to move me up the ranks to "her favorite" again. A place daddy has held for a better part of a year. :)

Dylann has to sleep in her tall braces all night which I was very concerned about initially. She actually is doing fairly well with that. It's only been a few nights I had to cave and removed them so we could both get some sleep. Her right foot has been super super sensitive since surgery. Her MD said it was probably nerve stretching. We are finally seeing some improvements there where she will allow some touching of it without screaming. She refused a pedicure with me last week, her favorite thing ever, so I know she's still not fully recovered. Doc said it would take time.

Next steps are to continue with lots of therapy, X-ray in March here, then return to Philly in April for a week long affair. She'll have some outpatient visits and then outpatient surgery to remove the pin in her hip and the plate in her knee. Sounds like it's same day procedure so hoping that sticks. She's already very agitated when we talk about going back for that visit. Her resiliency is inspiring and I learn from it daily! Also she has the strongest biceps I've seen in a 4 year old. It's hard to see here but she has a big bump!



Alright, so here's my vulnerability post for the day. I debated sharing this but I think it sheds light on the multifaceted things that come up for us. Most of the time I feel like I got this figured out, things are going fine. Until I realize maybe I don't lol. Maybe there are hard days even when I don't realize it. 

I lost it today. One of the hardest things when you have a child with special needs is going in public. It's so full of emotion that it really takes all the strength possible to be educating others on her condition, or trying to let the stares not bother you and being thankful she's still too little to notice or trying your best to ensure she experiences everything I would want a 4 year to and trying hard not to be sad when there are things she just can't. Frankly it also is a lot of energy with finding special places to change her braces when she has to use the restroom and building in extra time to support her independence in getting places on her own. It can be a lot.

I honestly have probably been asked about her  circumstances 400 times in 4 years. I truly do welcome people to ask questions. I prefer that over stares. It gives me the chance to share her diagnosis and experience and to brag about what she's overcome from what we were initially told. I've been asked about her in a number of ways: "what happened to her?" to "did you break her legs?" to "OMG! why is she like that?". Every time I smile and say my same lines. I've debated getting shirts that explain things or at least say "she has AMC" or creating cards that explains everything and I could just hand them out and not talk. But, so far I patiently tell her story and smile. For 4 years.

Today was different. I couldn't tell you why. I was in a good mood, nothing out of the ordinary. I take Micah to karate class and Dylann wants to come with. People are nice and inclusive to her there so she tags along and watches him and plays. When I get there a father asks me why she's in braces. I do my usual reply explaining her diagnosis and her treatments ending with my favorite punchline "and they said she'd never walk but look at her now."

The fathers mother (grandma) walks over and says "but, will she ever be normal?". Yep, game over. I snapped. I snapped at this 70 something year old grandma in the middle of karate class who I know had no ill will behind her question and I very loudly and rudely said "SHES NORMAL NOW!".  She actually surprisingly looked unfazed and said "but I mean, will she ever be normal, like walk without braces?"  I'm like " I didn't realize that was the definition of normal."

People stared at me and I immediately felt guilty and I walked away. I managed to ignore the man at the State Fair who was loudly telling everyone how slow she was walking and creating a line. I managed to politely respond to the many times I've been asked if I broke my daughters legs.  I managed to ignore the lady who came up to me at Cub when Dylann was in her first cast telling me she'd pray for us so the horrible things that were done that led to her cast wouldn't happen to her again. That one actually stunned me into silence so I might have responded if shock hadn't taken over. ๐Ÿ˜ณ๐Ÿค”. Nope, the grandma in the middle of karate class is where I decide to snap. It wasn't my best moment. Still feeling guilty 5 hours later.

I'm thankful for my mom support group. Tip to any mom with kiddo with newly identified special needs, find a mom support group. Mine immediately came to my guilt rescue and all had done the same thing at some point. 

Moral of the story... well probably a lot of things. 

One, I'm going to have to apologize to her next week ๐Ÿ˜’. 

Two, as strong and with it as I feel most of the time, I have moments like this. They aren't pretty. I'm human so expect others might do the same. I'm giving myself grace on this one.

Three, I'd encourage those reading this to ask questions when you're curious to those around you but be mindful of the approach. They probably have a lot going on. Things are tough and we want to protect our kids at all costs.

Four, no I didn't break her legs.

Alright, time to watch shameless from yesterday! 

Friday, December 15, 2017

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!