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.

Friday, December 10, 2010

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.

Wednesday, December 8, 2010


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!