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, April 10, 2013

For Sophie if you read this please go and look at the tshirts we are selling for sophie to raise enough money to take her to a conference for people with her condition. She really deserves to go. SHe has worked so hard and been through so much pain. She needs to be with people who understand that this isnt like your brothers friends cousins neighbors milk man who had a broken leg once. People who understand this is a lifelong issue and a lifelong battle. She needs to see people with her condition who have jobs, have children, and husbands and live the American dream. is also a fundraiser for the same conference. We have to have all reservations in by May 28 for July conference. I am a very giving person. I give everywhere I can. I help anyone who needs it. This time, not for me, but for my daughter, I am asking for help. So far we have had 3 donations and 2 commitments to buy shirts if we reach our goal. If we do not reach our goal no shirts will be printed. we do not even have enough for ONE plane ticket, much less hotel costs conference fees meals and a ticket for Me to take her.

Saturday, April 6, 2013

Fundraiser for Sophie

Sophie is doing a great job walking. We are trying to figure out the best walker for her to get her moving all the time. We have tried an otto bock and also a grillo. Otto bock is ok but Im not convinced its the best one for her and its huge. Grillo was very hard for her to work and she still had trouble standing straight. Meanwhile I am trying to raise enough money to take her to las vegas for a week to a conference there with a bunch of other people with the same condition she has. She needs to meet others with AMC, adults, kids, teens, all of them. She needs to see that her life can be like everyone elses. she can still grow up go to school get married have a family etc. she will just fine ways to do it her way. She really needs that encouragement. She often tells me she wont be able to have a baby some day, even though she really wants to be a mom someday. She doesnt think she will be able to because of her AMC. She needs to be where different is normal. where she can be Sophie for awhile instead of the girl in the wheelchair or the girl in the walker. She can be surrounded by other kids walking with walkers, using gait trainers, using walking sticks, using a wheelchair. She sees kids like that at shriners but that is a medical setting. She needs to see this in a social community setting. I am doing a tshirt fundraiser. if we do not reach out goal of 100 shirts reserved they will not print. Please go order one today! help our little peanut learn that she is just like everyone else. Its easy to say it but she really needs to FEEL it.

Thursday, February 28, 2013

Sophie is doing so well. She is working hard to learn to walk with her new straight legs. she finally gets to wear pants again! working on getting a walker for her to have all the time. She still uses her chair a lot but really she has only been in two KAFO and shoes for a week. before that was cast and post surgical and all that. she has only been fixater free since January. so not yet two months. She loves to stand every chance she can get. but it kills my back. she is working hard at school, at home, and therapy. She is going to go go go.

Monday, April 23, 2012

sophie is headed into external fixator June 6. ugh. details as they arise but this is the big surgery she needs to hopefully be a walker! she is strong and goes to PT and OT weekly. they are confident she will walk. I am too. SHE doesnt want to walk. she wants to RUN! and let me tell you nothing would bring a tear to my eye faster than seeing my original dream for her come true. I wanted to bring her home because I wanted to see that blonde hair bobbing in the wind while she runs on the beach. this is the first step for her to get there.

Sunday, November 6, 2011

want a chance to win a cool camera??

ever think about photography?
wish you had a REALLY nice camera? wish you could take better pictures of your kids and grandkids and dogs and cats? wish you didnt have to spend so much to have such a nice camera? well guess what! YOU have a chance to donate just 20 dollars to help bring a little boy home from Serbia. and in doing so YOU GET A CHANCE TO WIN AN AWESOME CAMERA KIT!!! camera, lens, bag, and more! go to
and donate so YOU can have a chance to win a Nikon D3100! kids sell wrapping paper for schools, and you could spend 20 bucks easily on school and sports fundraisers. you could spend 20 bucks easily buying a fancy coffee every day. but you really have a special opportunity here to spend $20 to give a boy a LIFE! and you could win an awesome camera for doing so! well? what are you waiting for? get on over and donate! lets get this little boy a chance at a real future in a family filled with love, instead of a cold sterile insititution where no one will love him as their own. 20 dollars people. thats all it takes. donate and you could win a camera! but if you dont you still win because you helped give a child the gift of a family! THAT is priceless.

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!