Dylann 5 days old

Dylann 5 days old

Monday, December 30, 2013

Craniosacral therapy

We saw angel again today after about 3 weeks. We saw another therapist in between. I caught her up on the recent changes with her casts and hip ultrasound. She says to me " you don't like your doctor, do you?" I became tearful and she told me my body language spoke volumes when telling her about it. We talked about how I'm working on finding someone I feel more comfortable with. She told me she feels Dylann can gain her range of motion in her knees, hip, and ankles in just the work we are doing and that she's made incredible improvements in just the 5 weeks we've been working. 

We then had the most amazing session! In a half hour she worked her hip back into socket and taught me how to do that at home each day as well, worked out the tightness of her quad and hamstring in her left leg and was able to bend it about 60 degrees even though our orthopedist said it wouldn't bend at all without surgery, and worked her feet so both ankles moved 25% more than they did prior to getting there. She is simply amazing! We are moving back to weekly sessions for now!

We also received the most incredible act of kindness from some friends of ours. My friend and her family do a white elephant auction each Christmas for their exchange and with the money donate it to a charity or family experiencing some medical or other hardship. Her daughter nominated Dylann as the recipient when the family was discussing who to give to this year. The rest of the family agreed and Dylann will be able to use this money for 8 sessions with angel!!! We are touched with how thoughtful this was and excited to see her progress more and more with each session!

As I work to find a provider I like, I am so comforted with our work with angel. I had never even heard of craniosacral therapy 3 months ago and now can't imagine what we do without it!

Monday, December 23, 2013

Gilettes visit 12/23

Not a lot of positive news today. Dylann had a hip ultrasound to see if they were affected. Her right one was in socket but the left one was not. Our doctor said typically they treat hip dysplasia with a harness the child wears for a number if weeks until the socket is realigned and growing properly. However he said for kids with arthrogryposis and the placement of her legs that it wouldn't work for her anyways. The only option is for her to have surgery between ages 6 to 12 months to place it in the socket. He said this is successful 75% of the time. The other 25% of the time it becomes dislocated again and could negatively affect the blood supply in the joint causing some of the connective tissue to die out. This would result in permanent damage and needing to wear a body length brace from there on out. He said in a few months we will have to have a discussion about these risks and if it's worth it once she shows us more how she will try to move. 

She also is no longer showing progress in her ankles so we are no longer doing the casts. She has braces that she will wear full time for a few months to keep the progress she has made and then will need surgery. If we decide to do the hip surgery then he will do the ankles at the same time to avoid multiple major surgeries for her. Even if we do all this, our orthopedic doesn't seem to feel to strongly that she will be able to walk someday. We don't come back now for a month. I think I might get a second opinion in the meantime. I have a hard time following this doctor and just want to be sure of all our options.

Tuesday, December 17, 2013

Thought we would cross a few things off the to do list this week..

But not so much. Yesterday Dylann had a 2 hour genetic appointment at Children's.  This has been recommended to us by most of her providers since many genetic conditions can cause arthrogryposis so they wanted to make sure to assess that. 

The genetic doctor asked me a question that no one had asked before so I hadn't thought about it. She told me there are 100s of tests that can be done so " how important is it to me to know what caused her joint issues?"  Hmm.. I told her what's important to me more is to know it isn't the severe and progressive things and that we are doing the right treatments.  She told me that after meeting with us and looking her over they her arthrogryposis isn't typical so she has a harder time just saying it's that. She also has a hard time saying it was amniotic band syndrome since she can't see the banding with her casts on and that her wrists have some joint issues and wouldn't explain how symmetrical that looks. That being said,other than her joint issues she is normal in her development and function which you wouldn't see with most genetic conditions. She did test for one form of muscular dystrophy that it could be albeit a 1% chance or less. MD was the diagnosis I feared the most throughout this whole wait time. Not sure when we hear back.   Next steps are to see her again in a few months and we could test for other gene mutations that cause arthrogryposis.

This morning we had a hearing test for Dylann. She failed her left ear test in the hospital. She failed again today. We have to see her pediatrician to check if fluid is stil in there then go back for a brain stimulus hearing test in 3 weeks too asses if she can hear out of that left ear. 

She remains a trooper through all of this !

Wednesday, December 11, 2013

Cast update.

Had Dylann's second casting change. Her ankles and knees made enough progress to continue!! He is hopeful it will help enough to avoid surgery on her ankles. He did say that the most difficult part is probably going to be how tight her calves are that of isn't allowing her ankles to move to a 90 degree angle. That might need surgery in a month or two. Her hips are also still pretty tight so we have an ultrasound on 12/23 to see if there is more going on. Moving in the right direction!! 

Friday, December 6, 2013

Casting

We just had Dylann's first recasting appointment after having her casts on for a little over a week. She has improvements in her ankles, knees, and hips!! They recasted for another week and next week they will know if there was enough improvements to keep casting and hopefully avoid surgery on her ankles!

Tuesday, December 3, 2013

Never a dull moment

 Dylann and I planned to snuggle all day since we haven't been able to do that yet :).  At 11 I got a call from the nurse at Gilettes regarding some labs we did over a week ago. She said we needed to go downtown to children's right away to repeat the labs as her "sodium was a bit high". I tried to get more information on what this meant but all she would tell me is it needed to be done today in case she needed "immediate intervention".  She also told me to wait at children's fir the results. So we rushed down. True to form in how our providers have been communicating for the last 5 months.... No one seemed to know what they were supposed to test for when we got there. Dylann and I waited an hour and a half while the nurses at children's and gilettes went back and forth about the order. Wierd to me that this "urgency" was preceded by an 8 day wait from when the labs were taken until they even called us then a few hour wait to even know what was being tested for. Hmmm?? When they figured it out, it then took two techs, 3 pokes, and one very very upset Dylann to get the blood. After 2 more hours waiting for gilettes to call me, the children's tech sees I'm still here and tells me she faxed the results an hour ago. I call gilettes, they can't find them, the new nurse on is confused why anyone told me to wait in the first place, and that the other nurse who called me this morning is now gone for the day. After several back and forth calls happily all her labs are normal. I have to say though that this is my 4th encounter with gilettes and each one has been disorganized, rushed, and frustrating. I keep hearing how great they are; so far I'm not impressed.