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!

Philly trip #137.... Ok, 6.. Just feels like 137

Just wrapping up our most recent visit. Grandma came so we could go to the beach for a few days after Dylann's appointment to celebrate my birthday. 

We got here Thursday afternoon and was settled in the hotel about 4. We didn't get into Ronald McDonald house so stayed in a nice city just north of town.

Friday was appointment day and was a long day. First Dylann had physical therapy. The therapist measured her shoe lift to see if that still worked and worked on some walking. Last time we tried therapy here, in March, she screamed the entire time. The therapist told us Friday she was prepared for battle 😂. Dylann did great! She didn't fuss once and did all she was asked. We left her shoes the same.

Then we waited for our appointment. There were lots of families and kids there so Dylann played with lots of friends. We got in to see Dr. VanBosse about 300.  It was both a good news/ bad news appointment. We started with her feet. He said her right foot is regressing so will need recasts at some point. Timing will depend on how fast she regresses. He also said that same ankle is twisted. Our bones that are side to side are front to back. He said he may correct this surgically at some point as its twisting her shin. We did a bunch of brace maintenance and measured her for new ones to be ready when we come back next time. That took an hour as they actually cast the kids then cut them off to get the shape used for the braces.

They forgot to do a X-ray when we arrived on her hip so we had to do that then come back for a second appointment so that's why we ended up at the hospital til 7 this time. Good news is her hip looks great! He said he's very pleased. He got her standing on her own and did some walking. He actually wants us to take her seat off the gait trainer to get her working harder when she walks.

I asked about when she needs to have her surgery to take out her plate on her femur. He said usually a year after surgery but is thinking he may wait until we do her right knee surgery when she's 4. It depends on how her X-rays continue to look cause the longer he waits the harder it is to get the plates off.

The new thing he said that I didn't like hearing was her back is starting to look uneven.  Kids with AMC can have bad scoliosis and other back impacts. To now she's had no back issues. He said it could be the AMC or it could be her body  trying all these new things with walking and her body adjusting. We will keep an eye on it. We see Angel Friday so will ask her but I think we're going to be in the market for a really good child chiropractor who's worked with joint/muscle disorders. Let me know if you have any leads with that. Were scheduled to come back here in 4 months. Even though Dylann is like any other two year old who has tantrums and can be impatient, I continue to be shocked at how perfect she is with all of this, better than me usually. She spent 9 hours in a hospital waiting room and visit rooms. She stayed entertained for 1.5 hours waiting in the room to see the doctor by playing with lights and gloves. She obliged when asked to put her braces in and walk 5 different times for different people.  She layed perfectly still on a hospital bed for an hour while she got casted and molded for new braces.

Then she sung us songs the 1.5 hour drive to the beach and smiled the whole time. She's pretty inspiring!

 

Friday night we headed to Ocean City to hang at the beach for a few days then home Monday afternoon. Here's some beach pics.

April Updates

Just wanted to send a quick update as its been awhile. Not too much has changed since we got back from Philly in March. We have our Gait trainer at home for the last week.  Dylann has been ok with it. She likes to cheat and use it like a skateboard so we've been working on alternating legs. She also started biking last week so I just bought a trike so Gilettes can adapt the peddles to have her strapped in. Hopefully this will strengthen her legs. We go back to Philly 6/9-6/13 so momma gets to spend her birthday there this time!

Otherwise things have been pretty much uneventful and status quo. Other then today which for some reason was a hard day. It's been awhile since I've had one as she's been so strong and resilient. I don't if it was from seeing her cry when using her walker with frustration and pain looking like she'd had enough of all of this. I don't know if it's seeing all these other AMC kiddos walking on FB. I don't know if it's cause each daycare drop off I see all the kids running around and leave her sitting by herself playing. I don't know if it's because I think she's starting to realize she has different needs then her friends.  I dont know if it's because the first time I saw my daughter today was at 8pm. Or because if I see my kids more and my husband and I don't continue to work a ton we couldnt afford to get her the help she's getting.  I don't know if it's because my son has started to act out more in what I think is a response to all of this. I just know today was a hard day.