First two weeks home

Since being home, we have had about 10 appointments. There have been some tests and consults to rule out of a few things. Her chromosomal tests came back normal. She had a neurological exam that was normal. She has reflexes in her arms and legs and startles appropriately. Since she was a week old when this was done, the neurologist wants us to come back at 4 or 5 months of age to do another consult just to make sure there arent delays. We havent done much with the genetic testing as that seems to be the area they are least concerned about, but we did run some labs to make sure her muscle enzymes are good and we are still waiting on those. Treatments: First, she will be having weekly craniosacral therapy. This was also such a great find. My sister in law got the name of a great therapist in the area, Angel Phillips. She was referred to as the best in MN. I did some research on her and it looks like she has trained many of the therapists in the twin cities. When I contacted them for a referral she was not taking new clients but I told her that I would be open to anyone at her practice as long as they were familiar with arthrogryposis. Angel called me back and told me she was going to work with Dylann herself!! She has had two sessions and the movements in her hips and knees are dramatically different. We are excited to have found her and to continue the work. Second, she started with Gillettes for orthopedic work. We had our first appointment this week and they already casted her feet. We will be keeping these on for about two weeks to see if the MD can get her ankles to start changing position. If they respond, she will be in those for 6 to 12 weeks and then in braces. If she doesnt respond, then she will discontinue the casting and will need surgery when she gets a little older. Her knees will need something although we didnt discuss this yet. Not sure if that will just be physical therapy or if surgery will also be needed. Also, she will have an ultrasound on her hips in the future to see if they are in the right place to decide next steps. Ideally with both of these interventions, we hope she can get the best range of motion in her legs possible and be able to walk someday. She has been such a tough girl through all this! She is the most calm baby and only cries when she is hungry. She has also been sleeping very well and giving all of us almost a full night sleep other than to eat. :) Next week she has her craniosacral therapy and then we will change her casts Friday and start to see progress.