Arthrogryposis......

Many people have recently asked about Olivia's feet and legs, and the plan, so I thought I would explain it all here.  Olivia has Arthrogryposis Multiplex Congenita (AMS).  AMS is a congenital condition that happens in utero.  The theory is that the baby does not have enough room to move adequatley and/or not enough amniotic fluid causing joints to contract due to lack of movement.  This can effect any or all joints in the body, depending on the severity of one's condition.  Olivia's knees and feet are the only joints effected in her body, causing the club feet and inability to walk.  Olivia's knees do not straighten completely so she cannot stand.......yet.  The plan ultimately is to get her walking, however this will never cure her from AMS. 

She will alway have AMS. 

When I first saw Olivia's picture the special need listed was clubbed feet, however once we looked at her file, and had a doctor review it, it was obvious that there was more than clubbed feet going on with her little legs, but at that point it didn't matter, I knew she was our daughter. We were graciously sent a video of Olivia from her orphanage that showed her legs and the doctor (DrV) said he thought she definitely has AMS. Well this doctor is in Philadelphia at Shriners Hospital, he came highly recommended in the adoption community for kids with possible AMS.  I was told he was the best in the country!  Many families fly to PA for all of there children's treatments, because they love him so much.  Well, me being a nurse, this means a lot. 

Ok, but let's be real for a minute.......PA, really???  How in the world can I do that, working full time with 4 kiddos.  So I thought, I would try the Shriner's Hospital in Greenville, Shriners specializes in orthopedics.  A friend who came home in November with her 18 month old son was going to Greenville for the serial castings for his clubfeet (he only has clubfoot, he doesn't have AMS).  Serial castings is when they cast the foot for a week, then remove and recast the foot for another week, this usually continues for about 6-8 weeks.  So I thought that I could atleast get the clubfeet fixed in Greenville and then possibly go to PA later for her knees, if needed.  Well, this all came to a hault.  While we were in China my friend, A, stopped going to Greenville due to some issues that I don't really have time to explain, and started seeing the club foot specialist in Iowa.  Long story short, her son's feet have straightened more in the 2 castings he has had in IA, than the 6 he had in Greenville.  The doctor in Greenville is not necessarily bad, or didn't know what he was doing, but that her son is 18 months old, not a new born baby.  Most children in the US with clubfeet get them fixed before their first birthday.  Not after years of the feet being in the same, wrong, position.  A asked the doctor in IA what he thought WE should do and he said, go to PA to see Dr V.........

I did take her today to a local doctor that was referred by another friend.  She was VERY nice and easy to talk to, but I'm not sure that I like her plan of care........She thinks we should NOT do serial castings on her feet and go straight to surgery, followed by 6 weeks of long leg casts and then 3 weeks of short leg casts.  I would much rather try the serial castings and see if that will help her first.  I think that if we can limit the amount of surgeries she has to have, it would be better in the long run.  Surgery is sometimes necessary, I understand that, but it can also be unnecessary and cause more problems in the long run.  Now don't get me wrong, if the majority says, or if Dr V says, yes she needs surgery, then ok, but I can't rest easy with only one opinion. 

I have made an appointment with Dr V in PA on April 1. 

stay tuned.........