This blog is about our journey with Arthrogryposis(AMC). It is not just a walk in the park. Flying all over the country for medical treatments for our two kids. Therapies and surgeries. Not always fun but always necessary.

Tuesday, December 29, 2009


Ben had his CT scan today. it appears that his head his misshapen for no good reason. This is great news. His head is oddly shaped but it isnt indicative of anything going on under his skull! that is a huge relief!

Friday, December 25, 2009


Sophie has been able to get herself to sitting from lying down when there were blankets bunched under her back. but never from a flat floor unless she could scoot her head along a wall. JUST NOW She was reaching for my hand and got herself to sitting!! She was reaching but never got my hand. I always help her if she TRIES. She is learning to TRY not just demand someone do for her. Today her trying paid off. I dont expect she will get up every time but if she keeps trying she WILL be able to get herself to sitting! I am very amazed with my AMAZING SOPHIE!

Wednesday, December 16, 2009

Shriners visit

So we went to Shriners yesterday. I dont know what I was expecting but I guess I thought that since they were already 4 and 6 they would be a little more aggressive. I am mostly ok that they arent. At this point for hands we are only splinting them both at night. For Ben that might be enough. Sophie however is more severe. We dont go back until March 17 to see the hand guy.

He also suggested that Ben may have cranio synostenosis.(I think thats what its called) where the sutures in the skull fuse before they should making a misshapen head. He said it can be problematic but often is just cosmetic. I want him to be all he can be but I really dont care if his head is asymmetrical. It isnt so much that anyone else noticed it. If it is causing a problem he will have increased pressure in his head. so since he needs to see an eye doctor anyways they will be able to tell if there is increased pressure and if there is then we will do a CT and go from there.

they also fixed bens broken AFOs (with purple straps which sent Ben into squeals of happiness when he saw them!)and fit both kids for new ones. Sophie screamed bloody murder through that. it wasnt painful but she just didnt like it. She doesnt like to be touched by medical people, ALL Of them are owies to her no matter what they do. Ben was more observant. He knew right away what pattern he wanted on his new AFOs. Blue camo with purple straps. Sophie chose fairies, we told her it was tinkerbelle because they didnt have tinkerbelle and she kept asking for tinkerbelle with hot pink straps. Unless they are out of fairies then she will get purple camo and hot pink straps. Ben's back up was stars with purple straps.

Next appointment is the lowers guy in January. The kids each brought home a stuffed animal and Ben has been carrying his little dog around everywhere ever since. he says its fabio(our dog). he is very cute.

We took the kids out for Indian food after appointments. They served Indian food on the flight home from Ukraine and neither kid would even taste it. yesterday they ate theirs they ate mine and they ate from anyone who was offering(not just anyone, I meant daddy and maia or each other). Gosh I love Indian food. The owner was very kind and in talking to us we found that Sopha (sophie calls herself sopha) means light in India. she is the light of my life so thats pretty appropriate. Both kids were really angels at lunch. and then the girls slept all the way home. Ben didnt sleep a wink.

Monday, December 14, 2009

tomorrow is hand doctor day

hope they say something positive. of course positive OR negative ANY news would be good at this point. a direction to go. So we will be up with the sun tomorrow and as soon as teh kids get on the school bus we will jump in the van and off we go to shriners. hope it doesnt snow.

Monday, December 7, 2009

sophie does NOT like being on her belly. Screaming crying carrying on as if you are killing her. but when I hold her body up she tries to crawl. but only if all the weight is on me. As you can imagine that doesnt last long before my arm is dead! but she loved getting a taste of locomotion. And Then I held her over my knee to pet the dog so she can get used to being face down. she cant really even roll herself over! babies do that at what 2 months old? I feel kind of bad that she cant even do that simple thing that babies learn and she is nearly 4. A feeling of why did they do so little? why bother fixing her club feet but not her knees or hands? why if no one wanted to take her home and love her did they put her through the misery of the foot surgeries? wouldnt it have been less painful(and cheaper for them) to just let her feet be clubbed? obviously she wouldnt walk anyways. She is such a loving beautiful baby girl that has become the light of my life and I get angry that no one took care of her needs. NEEDS! not wants, NEEDS!

Tuesday, December 1, 2009

the adventure begins!

The kids have an appointment to see Dr Moran at Shriners on Dec 15. and Jan 14 they will see Dr Mielke for orthopedics. Seems like a long time away but really is only two weeks until Dr Moran and only a month until Dr Mielke. Then we will finally (hopefully) have some answers. ANY answers. Hopefully some moving forward actions too. Sophie really needs to get use of her hands and arms. Ben can use his but not very strong and one wont reach neutral. so off we go. hope we dont have a snowstorm that day! or the day of the next appt in Jan.