We took her down to
duPont on Friday 1/30/2009. It took a total of 5 hours with doctors and therapist. We learned a lot while we were there. The staff was great there. They took us an hour early. They fell in love with her as soon as they saw her. I wasn't sure she was coming back home with us. The one therapist was almost doing
somersaults because she didn't have to see her for her legs and crying at the same time because she wouldn't be working with
LaRae either. We found out that her reflux, her arching her back and her red nose isn't a birth mark it is all part of
AMC. We will be going back down to
DuPont every 5 weeks to be refitted for her
splits. They will will keep increasing the angle in the bend in the elbow and
straighting out the wrist. Hopefully in 3 weeks she will be able to tolerate the
splits being on all night and on most of the day . They are left on 1 hour at a time with 1/2 hour rest all day long. We also have different types of therapies to do with her. The one is call belly time which Q and
McKayla like doing with me and the other is to get the
arrange of motion better in her arms. I am going to look into other kinds of therapies like water therapies. you can start them pretty earliy and horse back riding therapies. We have great hope that she will live a pretty normal life.
DuPont won't be able to due her surgeries so we still have to go to Shriner's Hospitals. But, surgeries aren't going to happen until she is at least 12 month to 18 months. They will only due one arm at a time. They will
decided at that time which are is responding the best to therapy. They will do the surgery cast it for several months they we have months of therapy before we know if the surgery has a
success. Then they might do the other arm. Then we start all over again with that arm. Let me tell you this was so much information to take in at one time. Brain over load. She will never crawl like a normal kid. She will have a creeper. She will lay on this so that her legs will push her around. It will be like she is crawling. She won't be able to feed her self until the 1st and 2nd surgeries are done. They won't be finished until she is 3 years-old. She will have to were the
splits and do therapy into her teens. So we have a very long road. they say it does get easier when they get older. These first 10 years are the roughest. She still has to go to Children's Hospital of Philadelphia (CHOP) for an ultra sound of the muscles. We found out that not only are they under devloped. But, she also is missing some. So we need to go to CHOP to see how bad that is. From my under standing is there is not much they can do to fix this. They need to know which ones aren't there at all. So please keep us in your prayers. I'm (Sharon) going to need them.
We took her down to duPont on Friday 1/30/2009. It took a total of 5 hours with doctors and therapist. We learned a lot while we were there. The staff was great there. They took us an hour early. They fell in love with her as soon as they saw her. I wasn't sure she was coming back home with us. The one therapist was almost doing somersaults because she didn't have to see her for her legs and crying at the same time because she wouldn't be working with LaRae either. We found out that her reflux, her arching her back and her red nose isn't a birth mark it is all part of AMC. We will be going back down to DuPont every 5 weeks to be refitted for her splits. They will will keep increasing the angle in the bend in the elbow and straighting out the wrist. Hopefully in 3 weeks she will be able to tolerate the splits being on all night and on most of the day . They are left on 1 hour at a time with 1/2 hour rest all day long. We also have different types of therapies to do with her. The one is call belly time which Q and McKayla like doing with me and the other is to get the arrange of motion better in her arms. I am going to look into other kinds of therapies like water therapies. you can start them pretty earliy and horse back riding therapies. We have great hope that she will live a pretty normal life. DuPont won't be able to due her surgeries so we still have to go to Shriner's Hospitals. But, surgeries aren't going to happen until she is at least 12 month to 18 months. They will only due one arm at a time. They will decided at that time which are is responding the best to therapy. They will do the surgery cast it for several months they we have months of therapy before we know if the surgery has a success. Then they might do the other arm. Then we start all over again with that arm. Let me tell you this was so much information to take in at one time. Brain over load. She will never crawl like a normal kid. She will have a creeper. She will lay on this so that her legs will push her around. It will be like she is crawling. She won't be able to feed her self until the 1st and 2nd surgeries are done. They won't be finished until she is 3 years-old. She will have to were the splits and do therapy into her teens. So we have a very long road. they say it does get easier when they get older. These first 10 years are the roughest. She still has to go to Children's Hospital of Philadelphia (CHOP) for an ultra sound of the muscles. We found out that not only are they under devloped. But, she also is missing some. So we need to go to CHOP to see how bad that is. From my under standing is there is not much they can do to fix this. They need to know which ones aren't there at all. So please keep us in your prayers. I'm (Sharon) going to need them. 
Wow! I'm so sorry she has to go through this! I hope she can over come it and live a "normal" life!
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