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!

Almost halfway through the spica cast

Today's the three week mark since surgery and cast day. We've sort of settled into a new routine. We don't leave the house much which I think is okay. She's pretty close to eating normally. We were spoiled last week with grandma Paradeis staying with us but have started back to our routine for the next few months. A friend from church started Monday as her PCA while she's in the cast. Dylann loves her and it's been going great! I will be working from home while she's here for now and be in the office 2-3 days a week probably through January. It's a fair bit of juggling but when I think we're almost halfway done, it doesn't seem like that's even possible. Time has gone by fairly fast.

The areas that could use some improvement are her sleep and keeping her cast dry.  Some nights she will sleep 11 straight hours. Others she will only sleep 3-4 total.  Most of the time she's up 2-3 times a night for about 20 minutes.  In some ways it feels like a newborn again.  The diapering is a nightmare. We've adjusted our approach at least 10 times and still can't keep it dry for an entire day. We've more just changed our expectations and added time to blow dry her each night.

We leave 1/9 to go back to philly and return 1/12. Cast removal is 1/11. She will get an X-ray this Friday to make sure it continues to look good. After cast comes off she will go into a brace for another month keeping her in a similar position. Then we go back in February hopefully for the final foot braces and clearance to start weight bearing.

As usual, her mood is great and she's as cute as can be!

Day 9- Philly and morning of day 10

 I went to write this post last night. Daddy gave me the night off so I came back to the Ronald McDonald house and fell asleep within 30 seconds! So no blog, sorry lol.

Yesterday was pretty much uneventful. She slept better Thursday night. She's been drinking some but refusing to eat. Our Doctor stopped by twice. Said if she went to the bathroom and kept having wet diapers we could go. She slept most of the day. There was some miscommunication between the nursing staff because starting about 5 people kept coming in thinking we should have been gone. So we sat here not really knowing what to do.

About 830 our Doctor came by. This is why he's so amazing. He too was surprised we were still here. He does outpatient visits all day downstairs until 5 on Fridays. We heard things were running late down there so figured we wouldn't see him again but he came up here at 830 after his clinic went that late! He still sat and answered our questions and said he'd figure out what happened with our discharge. He also said he wasn't on call this weekend but I could call him and he would come in if we needed anything. Of course I would never do that unless there was an emergency or something but the fact that he would say/do that is what makes him so much different then our other experiences.

They decided since it was close to 9 by this point we would leave in the morning. So, we're just waiting to get our meds and back to the RMDH we go. Bubba is starting to really miss us and us him and we want to get home so I'm going to work with Delta to see if we can get home a few days earlier then planned! That'll give us a good amount of time to get our routine down before we all go back to work 11/30. Momma got a new job so things will be a bit busy! Seemed like a good time to take that on ;)  Grandma Paradeis is coming to help us that week... Then were already almost 3 weeks into our 7 weeks till cast removal day if JANUARY 11th!!

Have a good weekend everyone!

Day 8 philly

Things are going much better today. Dylann was very agitated last night and ended up pulling out her IVs. She was super itchy and wouldn't take meds. We did manage to sleep from 1-4 or so. This morning they switched her from the Morphine which I was concerned was the problem. She doesn't do well with the narcotic/opiate family and acts really crazy on it. She was hitting us and throwing her meds. Something wasn't normal. Our NP put her on other options and sense then things are calm. She's a little agitated but mostly from being tired and having a hard time finding a good position. Her pain seems controlled though. 

At 10 we got to visit Temple university hospital to get a CT scan to make sure her hips were holding good. Things were happening over there! Plus we got to get out for awhile.

Dylann got fitted for her car seat. There were concerns that she wouldn't be able to sit in it because of how straight her back is in it. If it didn't work she would have had to lay on the back seat on her back and be harnessed to the seat. That didn't make me real thrilled but luckily she fit it and can also take it on the plane!!!

Otherwise she's been sleeping most of the day. She won't eat and isn't drinking a ton. We are trying to avoid getting another IV just to push fluids. Hoping tomorrow she'll be closer to herself.

Dr van Bosse came by at 7 on this way out for the day. He showed us how to diaper her and said her CT scan looked great. He said her hips are very stable and doesn't have to remove it under anesthesia which he often does for AMC kids in case they have unstability they need to work on or potentially recast. So that's good! He did decide just to be safe though she's staying in it for 8 weeks. So we're still way better then the 12 I initially thought but a bit longer then my initial 42 day count down! So we will be coming back mid January to get cast off, get a hip brace, and get her AFOs. Then we will come back a month or so after that to get her tall braces and do some therapy to try to get her walking!!!! :) Then my hope is we won't have to come again for like 9-12 months. Hoping for a good sleep night!

Philly day 7- surgery day

Things went good! Dylann woke up at 4am ready to play for the day which was fine since momma didn't sleep anyways. She was very excited to see daddy!

We got here at 630 for our 730 surgery. We had an issue where our western medicine and alternative treatment worlds collided. The initial plan was for Dylann to have an epidural for two days for pain management. Well Angel has her on some homeopathic stuff for immunity and bone and muscle trauma. Well one of them causes increased platelets so the anesthesiologist was worried she could get a blood clot with the epidural and decided against it. Oops.

They instead placed a small tube with local anesthesia right to the hip. In some ways that might have been better as we dont have to spend 2 days in the PICU.

Surgery took about 5 hours. The doctor said it went really well. He had to shorten her femur bone a bit which happens in 75% of cases but he was hoping not to because of how loose her hips were. This just means now she has a metal plate on her bone so in a year or so she will get it taken out.

We've been with her for a couple hours  now. She's in a fair bit of pain so we're trying to find a good amount. She wants milk but isn't allowed to yet so that's making her mad. She also isn't keeping her o2 stable yet so she's on some air. She's congested from the procedure and won't cough so that's most of the issue I'm sure.

Her legs are pretty wide. I'm told they're pretty stretched but they've seen worse. Tomorrow we meet with PT to look at car seat and stroller options. She also has a CT scan at 10 to make sure all looks well!

We're just snuggling and trying to nap.shes pretty beat.