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.

Wednesday, October 12, 2011

well stella was a no show

we were very disappointed. but some chocolate cake helped. Today we leave at 1045. supposed to arrive at 11 and surgery isnt until 2. Sophie cant eat, which means I cant eat! and man I am hungry! I might have to hide in the kitchen and get a bite of something while she is distracted playing. She is scooting all over, and there are so many things that will change with this surgery. She probably wont be able to scoot. at least not the way she does now. her legs will be better aligned so getting dressed will be easier, thats a good thing. getting her into and out of carts and car seats will be different, I dont know if it will be easier or harder yet, I just know it will be different. I dont know whether to bring the stroller today or carry her? my back is killin me. its raining out and I dont know if Beckys car can hold te monster stroller. and it would just be one more thing to move around and keep track of. so maybe leave it here for the time being. Since surgery isnt till 2 she probably wont be back until 5 or 6 and she will probably be sleepy off and on through the night and I can always come back for it tomorrow. so I guess I will carry her. Better take some ibuprofen though. She can go barefoot I told her because she wont need her boots and I dont wanna carry them around while she is in surgery.I think I can probably throw her straps in the trash. she will need new ones when she gets new boots. and tat wont be for 6 weeks. I have been very nervous about this whole ordeal. the surgery, how will it go? will there be complications? will it be successful? the recovery, how will it go? will she be pissed off? will she be calm? will she be snarly? I just dont know the answers to any of this. but I am ready. she is ready. She is happily playing with her princess doll. I suppose I better start looking at getting my stuff together for the day. thinking to change bags for today. so need to put my purse stuff in backpck. wish us luck! think of our dear sophie! I feel calm, Im sure it will be ok.

Tuesday, October 11, 2011

tomorrow is Sophie's big day

Tomorrow is Sophie;s big surgery. well the first of many I suppose. She is not at all concerned. She only wants to be sure that she will NOT be awake when they put those pesky casts on! I assured her she wont be. We are excited for the outcome. Putting her own pants on and underpants on will be a possibility. she can never get them over her flopping outward legs. Surgery is scheduled for 2. We need to be there at 11. unfortunately she has to be npo after 1030am, and only clear liquids after midnight tonight. I told her we would stay up late and have a snack. Surgery is scheduled for 3 hours. may be more may be less. hoping for no complications and NO spica.

Today Sophie and I walked for HOURS, or rather I walked and pushed her in stroller for hours. We went to see the liberty bell. we saw lots of history and historical sites. lots of stuff about Ben Franklin. Just wasnt as much fun without Eric. I kept thinking how he would love it there. maybe someday he and I can come back.

Tonight is therapy dog night here at Ronald McDonald house Philadelphia. Sophie is beside herself waiting to see STella. She is a mastiff, and we met her several times before. We are both excited. I love that dog. and hopefully she will relieve some of my worry and stress over doing this whole thing alone. a little doggie snuggle time, a long hot bath and I should be good to go. Sophie is such a good little traveler. she is pretty easy going about anything and everything. She has been happily entertaining herself with a little notebook and pen for almost an hour. but now its almost time for dinner and we are parched from walking all day. Time to go get a drink and some dinner. and then STELLA TME!