whew! whatta day!

sophie and ben are doing just fine. they came through the surgery fine. Ben didnt want to wake up and got combative. caught me in the face a couple times. he was still asleep though having no clue that I was even there much less that his flailing hands were making contact. he seems to be recovering a little slower than sophie but I gave him some pain meds and he is now playing. we took a nap when we returned from the hospital as our day started at 4am and we were completely exhausted by the time we returned at 1. They have had some crackers and juice and now moved on to cookies. Ben isnt very hungry and sophie really wants juice more than eating. Dinner in an a while and I dont know if they will eat it or not. I dont think they will be real interested in dinner but wait and see. Must return in 4 weeks. they initially wanted us return in ONE week and I was like hello! you could have told me this and I would have just stayed a week! but I cant come BACK next week. so they will have us back in 4 and then do afo castings and then leave them in short casts for a couple weeks until we can come back for the AFOs. Sophie got pink and yellow swirls for her cast and Ben chose purple with red swirls. pretty darn cute. the pharmacy at Temple filled our scrip and they didnt include a doser! so I hope that somehow I will be able to come up with one. for now we used the measuring spoon. Eric says the dose is way too high and too risky so I didnt give them the whole dose. seems to be working thus far.

tenotomy

off to philly this week for tenotomy for both sophie and ben. hope it all goes well and they dont have too much pain(and that they can deal with it calmly if they do, sophie tends to go into histerics) Leaving in half hour to head to Uncle Bobs house. then tomorrow to the airport. hoping they have room for us at erie ronald mcdonald house. My friend Becky is going to pick us up. she and her daughter Sammi are so nice and I sure enjoy having someone to chat with. so instead of feeling like we are going to a big city where we know no one it feels more like we are going to see an old friend when we get to see Becky and Sammi. and they are SO kind to give us a ride from the airport, saves us about 50 bucks!!! thanks so much for your time Becky, and your friendship, we sure enjoy seeing you guys! Will return home on Saturday and thankfully NOT an early morning flight. no 3am wake up calls for me! well unless the kids have surgery on friday at like 6 then maybe...I havent yet heard when we need to be there. not sure when they will call. they were supposed to call me weds since we will be in the air friday. wait and see I guess. details as they arise!

update

casting is almost done for sophie and ben and then they will have tenotomy surgery and new casts for several weeks. No date for Sophie's Osteotomies. Sophie will need to wear AFOs (she calls them foes) full time to help prevent relapse. Ben already is used to wearing his full time. Guess I ought to invest in some smart knit socks for her. I am not going to find knee high socks in her size. Her feet are the size of an infant. She has been getting up on her feet in these casts. amazing! I cant wait to see her straight and in line!!!

due to scheduling difficulties we had to delay our trip to philly. We are going back tomorrow. new casts! Ben has gotten so he can stand on his and can almost let go and balance! amazing!

kids are on their second set of casts. they got orange and pink last time(Ben loves pink!) and this time they both got blue. I told them they looked like blue jeans. Wonder how long we will have to do this. flying back and forth to philly is difficult and time consuming not to mention its hard to be away from the other kids. waiting to hear surgery date for sophie's osteotomies.

new doc new treatment plan

New DOCTORS new plans and new CASTS!

well let the adventures begin! sophie and ben are both in LONG LEG CASTS. both kids both legs. straighten out those crazy feet. this doctor is RUTHLESS in getting these feet into position. its hard for us to deal with as it hurts the kids a bit as the stretch is so tight. but this COULD be all Ben needs to have straight feet. we thought he had a rotation and would need a derotation but he doesnt! its all in his foot! hoping this works to avoid surgery until he is much older. Sophie on the other hand this is just the beginning for her little legs. the stretch is very tight for her and she complains a lot. but once she gets these feet straightened out we will work on her hips. then her knees. For Sophie's hands we will do nothing for the time being. As she needs her hands to motor. Ben needs one surgery on his one hand. its fairly minor when you consider what COULD be done. tendon transfer will solve most of his hand problems. It is a pain to go to philly for good care but we just werent finding it locally.