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!
