Genetic results

Miss Dylann has had quite the week!! First she did her first roll from back to stomach and independent sitting!! We were told she wouldn't be strong enough to meet her gross motor milestones on time. Well, they clearly don't know miss Dylann!! :)

She saw her other neurologist this week. He was very happy with her progress. He said her muscles all look great. There is some expected weakness in her calves and her left shoulder but they continue to get stronger between sessions. We don't have to go back until she's a year. 

Not sure yet if we are going to start MNRI that I put in my last post. We had our initial session and it's very expensive and her only opening is at 1145 on Thursdays. That would be a 2.5 hour round trip adventure so not sure I can swing it for work. I'm going to see if insurance makes the exception (doubtful) and get some more info on its effectiveness from our OT before making a final decision.

I also started working on starting a annual 5k in Minnesota to raise money for arthrogryposis awareness. Through my research, I found a Facebook group for moms with children who have arthrogryposis! So I have been learning a lot. I get to meet many of them at the annual conference in July. I also met a mom who lives in Minnesota and takes her child to gillettes. They see the orthopedist I was thinking of switching to and love her! So, I think I have finally made the decision to change! I'm going to call the nurse this week. I feel so much better about this decision!

And lastly, and possibly the beat news, I got a call from Dylann's genetic MD today. All of Dylann's tests came back normal!!!! They ran a panel of 9 distal arthrogryposis diagnoses ( sheldon hall, freeman, beals syndrome, etc) and a carbohydrate deficiency panel and everything looked great. She doesn't have anything else she would test for at this point and will see her again at 1 year. So we still have no cause or reason for her condition, but I'm thrilled with this and am okay with not knowing now that the last group of major diagnoses has been ruled out.

Phew... And it's only Wed! :)

Treatment plan updates

A few things have happened in the last few weeks. First, I attempted to get new braces through Dylann's physical and rehab MD. She has recommended we keep stretching her ankles despite the stop in trying to correct their placement with casts. Her physical therapist 

agreed. The problem is Dylann has outgrown her other ones. Jeremy took her in Friday after an order from the nurse to her fitted for a different off the shelf kind for now. Well the orthotic tech didn't have a clue what we were talking about so after a long appointment he ordered her something. I was at gilettes today for another appointment and asked if they were in. A different orthotic tech came in and said what was ordered wouldn't work and wanted to see what her orthopedist said today who ultimately cancelled the whole plan. He said it wasn't worth spending anymore time and money on braces that won't do anything. To which I told them how frustrating it is when each MD tells me something different and I run in circles.

The rest of that orthopedic appointment was equally as disappointing. He said her ankles are too small to operate on yet and that she's very petite. The risk would be he would have to redo the surgery in a year anyways. He said he needs to lengthen the heel cord as well as remove a bone from her ankle to have more room to get them flat to the ground. He said maybe in 6 more months she'll be ready. He also said he won't do the hips with it and that will be when she is over a year to se her desire to ambulated first. He again stressed the 25% chance it will redislocate and have blood supply issues even with surgery. Momma left pleased from that appt per usual.

We are going to start a new therapy that angel recommended so I'm feeling hopeful about that it's called  mNRI or the masgutova neurosensorimotor reflex integration. I don't fully understand it all but it has something to do with the genetic motor reflexes and resetting the nuero pathways for her to move her joints better. I know that it's weekly to start plus 5 to 10 hours of things I will do at home to allow for the repetition. It's expensive so I'm in the process of drafting a letter to our insurance to see if they will consider covering it since it's excluded. 

So, not too much going on, lol. She turned 6 months old yesterday and absolutely loves her big brother!