Dylann 5 days old

Dylann 5 days old

Monday, February 24, 2014

More doctors

Things seem to be picking up again. It's hard to keep up with all this and be back at work full time. Hopefully the appointments will slow down eventually!

Dylann has had 2 meetings with her physical and occupational therapists and have been helping a lot with stretching and strengthening her left arm muscles. 

She continues with Angel for craniosacral therapy which is going well. We keep working on her hips and legs. Her orthopedic MD even commented on how much her left knee had improved.

Last week she saw a neuromuscular neurologist for a consult to see if he thought there might be any muscular issues that are the cause of her arthrogryposis. Overall he thought her muscles were doing well. He said she has mild muscle loss on her shoulders and thinks she might have had some nerve damage in her left shoulder due to positioning in utero both of which will strengthen over time. He doesn't think her arthrogryposis is muscle related. We will see him again in May though to keep checking in.

This morning she started with physiology rehab MD who will keep monitoring her to see if we ever should add more services. She thinks she's doing well for now. She wants us to use her braces a few hours a day again just to stretch her ankles to help continue to increase her range of motion. Otherwise, just keep on doing what we've been doing. 

Next month we take her hearing test again and see her genetic MD again to test for a few more things. 

Monday, February 10, 2014

February updates

Not too much has been going on lately. Dylann continues to go to weekly craniosacral therapy and we continue to see little improvements. We just finished our assessment with the birth to 3 program and Dylann will be starting physical and occupational therapy with the school district twice a month.  We also meet with gilettes rehab MD soon to see what else might be recommended.

Dylann had an appointment today with her orthopedic doctor at gilettes today. He took an X-ray of her hips and the left one was still out. He thought her knee range of motion had improved some. Her ankles looked the same, not better, not worse, so he said she can be done with her braces now. He said he wanted to keep waiting to see what she decides to do with her motor skills so he wants us to wait until she's 6 months to check back. He said if she wants to start ambulating and is pulling herself up etc then he would be more eager to do her hip surgery and ankle surgery sooner. Otherwise he's in no hurry I guess. 

So her legs will get some freedom from all the restrictions she's had since two weeks old and we will take a 3 month break. We see the neurology specialist Friday who specializes in arthrogryposis to see if we are missing anything.