First, I'm trying to finalize a few things for the 5k and then I will post the race website and open sign up. I'm trying to change locations for a few reasons and hope to know this week. My goal is 200 runners so hopefully you all will consider running/walking in it!
So Saturday the 12th will be one year from our ultrasound when we first learned of Dylann's condition so I've been thinking a lot about the last year. While we still have no cause or explanation, I am so happy and blessed to have Dylann here with us and doing so good. I am thankful everyday. The 12th was also the same day our second level ultrasound MD suggested termination and everyday I still feel mad about that a year later. I can't even imagine not having Dylann here with us. That is part of the reason I feel so pulled to help support amcsupport through this 5k and the wear blue on the 30th to raise awareness for our MDs as well and be better able to educate and support parents.
Last week I had the pleasure of going to the 9th annual arthrogryposis (AMC) conference put on by amcsupport and it just happened to be in minneapolis!! It is comprised of medical and support sessions for individuals and families with AMC. I met some great people and attended some medical sessions that has me really thinking of new plans. I'm thinking of increasing the amount of PT to include outpatient and the school services she is already getting just to gain as much range of motion as possible. The other noteworthy consideration is regarding visiting yet another orthopedist. Last month I made the decision to have Dylann see another orthopedist at gilettes and our first appointment is in August with her. At the conference the country's AMC specialist was there for some talks and he is on the organizations board of directors. I'm torn about taking Dylann to him instead. His strategies are different and he has dedicated his career to working with this condition. The concern is he's at Shriners in Philadelphia. It's hard to know what's the best thing to do for your child at times with this as an option and living within 30 miles of gilettes and Shriners MPLS. I'm not sure what I will do at this point.
Otherwise Dylann's treatments are going well. Her craniosacral therapist has moved her to every 3 weeks since she's maintaining so well in between. We did MNRI for 3 sessions and stopped because Dylann absolutely hated it. For a baby who never cries, she was telling me something. I may revisit when's she's a bit older. Her phys/rehab MD is going to start using Botox in her ankles and knees in a few months to loosen the muscle tightness. That was something I hadn't heard or read about but we'll try it!
Were on our first family vacation this week! So that's pretty much it from hill city SD!
