Wednesday, August 31, 2011
Tuesday, August 30, 2011
Monday, August 29, 2011
Sunday, August 28, 2011
Friday, August 26, 2011
Wednesday, August 24, 2011
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.
Tuesday, August 23, 2011
Monday, August 22, 2011
She can't use her l leg to peddle at all. So they made it so her r leg can peddle. ( She already has a massive leg muscle in her r leg) without slipping. She worked all afternoon with diff. ones of her siblings and finally she got it down....Go Mya !
This is Mya's full leg brace that she wears all the time. It really does help her to walk and she wears it all the time...except of course this am when she ate breakfast and she parked it :)
They jimmy rigged a piece of tape like a stirrup to hold her foot in place. She can't peddle at all with her l leg so they removed the peddle and she just hangs her leg down . The r leg does all the work. She and her siblings worked all afternoon balancing her. She has wanted to ride a bike for real for a long time and today she did it. I am very proud of her....NOTHING is going to hold this child back. I love the tenacity and courage of these children...they are such an encouragement to me...and they are my heros.
Saturday, August 20, 2011
Friday, August 19, 2011
Thursday, August 18, 2011
The top 2 pics were ones I found on an old memory card....My it brought back such dear memories of my little guy....Look at him now. Open heart surgery for VSD repair and aortic valve repair that had prolapsed into the VSD. No palate and bilateral cleft lip, R leg folded like an accoridian ( not in these top pics) and fully attached to middle of his back at birth, L leg webbed and a severe clubfoot, and a spinal myloceal....My he has come along way and he was so cute- still is :) Next month he turns 10....Praise God for meeting each one of our financial , spiritual , emotional and all of his medical needs when we became obedient to His will to adopt him - He came home in Oct. 2004.