sophie lifts her legs

amazing Sophie and Wonder Ben

boy the things these two have been doing! they are headed to Philly the end of the month to see a doctor who actually has hope for them. After a year of seeing doctors who are misinformed about AMC, refuse to do anything for them, or are just plain not interested we are excited that someone sees them as we do, untapped potential. Looking back over the last year Sophie has gone from being unable to do ANYTHING for herself to doing all kinds of things. She can sit up, roll over, scoot, crawl, kneel, go down stairs, feed herself, and use a cup, and now do you know what she is doing? lifting her knees to make them come together as she sits on her bottom. Think butterfly. if she was to sit on her bottom her legs naturally fall open like a butterfly. but with effort she can LIFT them up. this is huge for her. she was not able to lift them even an INCH a year ago.

Ben has gone from toddling to walking and RUNNING. he doesnt run fast like other kids but he definitely runs. and he has learned to feed himself dress himself put on his afos put on his shoes take off his clothes shoes and afos and is learning to pedal a bike! that is hard work pedaling a bike! When we came home with him we had little hope of him riding a bike. but now? perhaps there will be a family bike ride in our future. I think we might have to look into an adapted bike for him.

sophie's knees are at approx 90 degrees

sophie can crawl she can also get herself to tall kneel on one leg

while I was in Ukraine

Sophie decided to take it upon herself to learn to crawl! she is crawling more and more every day!! amazing incredible beautiful wonderful child of mine!

I heard it through the grapevine

that my Sophie is CRAWLING!

update

one more cast for ben. he now has afo and cast and is walking great. cant wait to see him in TWO afo and shoes. he will be great! you should see him take the front steps now. they arent that big and there are only two but there is no rail and he has gone from completely unable to navigate it and climbing down on his bottom, to walking up or down it no problem just like everyone else without even a wobble. I am always amazed at how far he has come.

Sophie's appt with Dr S didnt go so well. He says she has weakness in her shoulders and back and chest that she/we can work on and she CAN hold her arm out in space without letting it drop. so thats encouraging. but he didnt see a lot of hope for her legs. I just cant seem to understand. they can put a man on the moon but they cant undo a knee contracture? he said serial casting might work. he was willing to give it a try. he also thought she could have those hands rotated serial casting rather than surgery. but why cant anyone do anything about her legs? she has quads. we know that. all she needs is legs in the right position? I dont expect her to run any marathons. but is it too much to ask that she be able to transfer and walk a little within the house? this would go a long way towards helping her to be independent in life with self cares and living alone. We adore her but we want her to grow up and move out like all our other kids! she is so smart, I know she will want that too. but if she cant take care of herself how is that possible? after I get home with the girls and get settled maybe we will have to take a trip to philly. its our last shot.