This is the device Anna is having placed on her head . It is called a Rigid External Distraction RED l l System. It looks and works like Mya's and Luke's external fixators they had placed on their legs. When we were told by 4 orthopedic surgeons that Luke need to have his r leg amputated...there was something that did not seem right in our hearts and we kept pursing another opinion. Fianlly after we saw the head of orthopedics at Childrens she said, "His case is to much for me but I know where to send you." We were sent to Dr. Shawn Standard at Sinai Hospital in Baltimore. Thus began a relationship with a man whom we all love and watched do miracles. His recommendation was surgery to release Luke's leg from his back and to place him in the ex. fixator which I would distract daily and it would move his very bent up leg to more than 180 degrees . ( They over compensate for growth by about 20 or 30 degrees ). We did this and Luke now walks and runs and plays sports ( right now he is canoeing with some brothers and Mr. Dick - our friend from church).
Then when Mya was evaluated by Dr. Standard he recommended again the external fixator and again we watched her femur grow several inches and she now walks and runs and even rides a bike :) For other families with children with arthrogryposis or polio or even cp doing an external fixator is a hard decision...I know because I have talked with them. Some choose to amputate or other methods because this external fixator is a difficult apparatus to manage. The pin site infections you can get are devestating and the physical therapy is almost overwhelming ( I did both of thiers with great success- so it is not impossible even to be taught it if you are into and motivated to do your own children's therapy). It is not my favorite device or medical surgery at all. Having done now over 75 surgeries in the 8 yrs plus I would say it is one of the hardest for me...BUT it works and works well. So at first when we were at the cleft clinic at Hopkins with Anna a few yrs ago and they started to describe the device they wanted to place on her head...I looked up and said," Is that like an external fixator but on the head?" Yes, it is but the worries about pin site infections is not a part of it and she only needs to be in it for 6 weeks. So we are now at this point...Anna is unsettled understandably so...but she keeps having a reaccuring dream where she is walking and someone is walking behind her...He tells her everything will be alright. She believes that it is Jesus speaking to her and giving her reassurance and peace about what she will be doing. I don't know how people walk thru life without a personal relatioship with Jesus. I thank you Lord for giving her the peace as she walks thru this next 2 months and I am grateful that her heart soil has been open to all that He has to offer her. So please pray for her and our family as we step into this next journey with Anna.
You can really see the change in this girl's appearance...We look forward to watching Anna.
This was placed in her mouth yesterday at our orthodontist. We work in conjunction with several of our doctors for this type of surgery.
This is how she has spent most of her days this past week...She is not allowed to do much and nothing active. She has done puzzles, colored and her DS game and even met some of her friends for a visit which made her very happy. 
Anna now 1 week post op
Anna pics taken 8/24 - l day before her surgery.
The pins that come off the mouth piece are what I distract with this instrument - 2 turns on each pin daily. We met with the surgeon yesterday and he gave us the ok to start moving her jaw this way. She does not feel any pain from it and by Tuesday, 9/6 we will have moved her another 5to 6 mm. 
