Getting bigger!

Dylann turned 4 months on Thursday! I can't believe it's been that long. She had her well baby appointment this week and has moved on the charts to 10% weight and length!! She's talking non stop and so smiley and happy!

Her last craniosacral appt last week went really well. Angel said she's starting to maintain all the things she's doing for her so she can do a lot of her own work between meetings. We are moving the appointments to every 10 days. 

Dylann had a follow up appt with her neurologist this week. Overall it went pretty good. He wants to see her one more time at 8 months to make sure nothing else creeps up but he doesn't think it's neurological and feels she's progressing fine cognitively. He said we should spend time with the doctors who can more impact her motor needs to get her walking and running.

I told him my concerns about whether or not to treat her hip since there's a 75% chance only of success and kids can walk with displaced hips. He said "dr sunberg is the best around; I'd let him operate on my child. I know he's not the most warm and friendly guy because he's busy and always running but he's the guy all the doctors in town send their kids to. She's in good hands."  And that's that I guess!

We did spend sometime talking about her muscles so I asked him if he thought that as she grew if her legs would start to look very thin and atrophied. I had seen this in a lot of the literature I had read. He said he suspected her legs would be very thin with little muscle and have thinner arms. It mad me feel a little sad all over again which happens after most if her appts. Like I'm back at that first appt all over again. I just worry about how others will treat her throughout her life. High school was hard enough for those of us who didn't have a medical condition. It seems more harsh now. I don't ever want her to feel bad or different but I know I can't control that. :( I also know things could have been a lot worse with the laundry list of things that can cause this so I know to be very thankful and grateful. 

Next week she has physical therapy, craniosacral therapy, her hearing rescreening, and a follow up with her genetic counselor. I think she is going to start testing her for more things to see if we might be able to get some answers as to what caused her arthrogryposis some of which would be hereditary if she has kids someday.