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.

Philly trip #5

It's been a busy last few weeks! Dylann returned back to daycare 2/29 and has enjoyed being around other kids! She had a rough few drop offs but seems to have acclimated well to the new routine. She has started to sit on the potty there, naps on a cot just fine, and talks about a new boyfriend each day :).

That same week however her demeanor started changing. She would wake up crying at night every 1/2 to an hour and she screamed whenever you would move her left leg( the one with the hip that had surgery). That went on Tuesday - Thursday and I was worried her hip was out. Her knee was swollen and it was hard to tell where it was hurting cause she'd point at her whole leg and sometimes to both legs. Friday morning we went and got a X-ray then emailed it off to Philly. Then we went to see the amazing Angel!  She spent an hour with Dylann and she was a totally different person! Dylann was letting her touch her leg and everything. She could tell around the knee was having a lot of inflammation. It's crazy how amazing Dylann does after we see her!!

About 6pm that night we heard back from Dr VanBosse in Philly. He said the good news is her hip looked great! phew!!! The bad news is she had a fracture in her femur just above her left knee.  He said that can be common for kids with AMC after having been casted for 4 months then trying to move around so much. He said to try to avoid a cast to put her in her KAFOs (tall full leg braces) and lock the knee straight. Luckily we were already scheduled to come see him in a few weeks so was a good plan although Dylann HATES the tall braces. It was a bit of a fight but we managed to keep them on. The rest of the week or so after that was pretty uneventful.

We got to Philly this Tuesday. All 4 of us came since it was Micah's Spring break. Wednesday Dylann had physical therapy which went ok. She stood for awhile with a wedge on her shoe and has improved a lot on bringing her leg back in from how it was casted out to the side. We spent the rest of the afternoon wandering around downtown Philly since Jeremy and Micah had never been and it was 80 out!! 

Yesterday Dylann had more PT and it didn't go as well. She said she wanted to walk the whole drive over but then screamed and cried once all the tools came out. So that was short lived.

 During the afternoon we met some new friends, Hope and Kristy from CA. Hope is 3 and running around! It's so wonderful to see kids with AMC as they are older and the capabilities! Kristy and I were talking about how invaluable it is to meet other families and the amazing support!

We also went and played at a park since it was another beautiful day out!

Today is our last day in clinic at the hospital. She was anti therapy today. She wouldn't even stand up and screamed so we stopped after a half hour then had to do an X-ray which is not her favorite thing. The MD schedule was light today it seemed! We got right in at our scheduled time which I don't think has ever happened! Of course Dylann fell asleep 5 minutes before that!  

The MD appointment  went great!! Her fracture is healed! Her hips look great! Despite her screams, he got her to stand on her own!!! She needed a one inch wedge on her right shoe to account for her bent knee but then she did it....reluctantly! So we got the ok to wait three months before we return! Was hoping a little longer but that'll work!

So back to the RMDH we go to get packed up and ready to head home tomorrow.  Got a busy few weeks with another cooking night at the MPLS RMDH, Micah's birthday, then Easter.  Thanks to everyone for the kind messages and thoughts this week! We appreciate all the support!

It's been awhile!..

I didn't realize I hadn't posted in a few months so here goes..

The remainder of the cast time was pretty painless for the most part. She started to sleep good the last 3 weeks and having things align with the holidays made it go quick. We flew back out to Philadelphia January 9th as a whole family. We got to see our friends the Prices and watch the Vikings choke then had her appt Monday.

I think we earned the award for the most disgusting cast at removal time. I was pretty embarrassed and still do not understand how everyone else seemed to keep their child dry.

Before cast removal...

After...

Dylann pretty much hated that day. She was sore and agitated and we spent 7 hours at the hospital but the doctor was happy! He kept telling me I had to act normal cause I was anxious about her pain and she could tell, lol.

Little RMDH fun..

We left the day after her appointment and managed to fly home with only one 20 minute scream fit from pain.  The first two weeks were tough for her but she improved a little each day.  We are supposed to be out of her brace during the day for the last 1.5 weeks but she's having some emotional trouble with that. 

We are probably at 60-70% without it but she continues to ask for us to put it back on.

The week after we got back we had our first month cooking at the Ronald McDonald house in Minneapolis! It was so much fun and look forward to many years of doing that and working to give back for all the wonderful ways the philly RMDH has helped us!

This week had a number of firsts for Dylann! She took a bath, crawled without her brace, went swimming, and wore pants all for the first time since October 8th! She's so determined!

We also had some annual appts Tuesday. One of which is neurology who wants to keep an eye on her since many conditions that cause arthrogryposis can have other impacts, neurological issues being one of them. The good news is he said she's awesome and we get a two year break from seeing him! He's the only MD who agrees with my theory of how this likely happened which is that the amniotic band syndrome caused her lack of movement and subsequently the arthrogryposis and not from a neurological or genetic condition. All in all it doesn't matter cause our treatment plan wouldn't change.

So what's next for Miss Dylann?! Well in the short term, for the next month we do a ton of physical therapy , 2-3 times a week to try to get her ambulatory again. She restarts daycare in 2.5 weeks. That makes for a nervous momma since she's the only non walker in the toddler room. I was actually going to go the nanny route but my MD strongly encouraged me to have her in the center so she can be around kids her age all day. Outcomes look different with these motivators of seeing kids walking apparently.

We go back to philly for a week in March for a lot of physical therapy, X-ray, and check up. We will also need to put a wedge on her shoe cause her leg with the bent knee will be shorter until that's addressed.

Long term she'll need the hardware from her femur removed in a year and a knee surgery in 2 years. My hope is that our travels will lessen after this trip. I could use some time to relax. Ha! Who am I kidding.. I don't know how to do that!