Please read what was posted on another blog from a girl who also has the same condition that Anastasia has. She knows what Anastasia is capable of, because she lives independently and leads a normal life like you and me. She is an inspiration to all the children and adults with AMC.
The following paragraph was copied and pasted from Anastasia's RR page.
From one of our adoptive families who met her in September 2011: "The great news is that she does have rotation in her shoulders and some in her hips and also they say she does NOT have hydrocephalus! Her heart condition is basically that she's not active enough – her heart-rate isn't stimulated often. She had a brain scan that showed she is normal except for enlarged ventricles in the brain, which they did not feel should affect the function of her brain. She is very weak, though. She cannot sit on her own and they said she could hold her head up but when I held her her poor little neck could hardly stay up (I'm sure that would change with some p/t). They handed her right to my husband – a big guy – which frightened her, poor little Anastasia! They told us she liked music so I took her and sang to her and she calmed a bit but then still wanted her nanny. I can't tell you how much we truly WANTED so badly to take her home with us! She is just precious! But she has never been out of that room and will really need a family who is experienced with institutionalization challenges, and to help Anastasia LIKE the world around her!"
The great news you can take away from this report is that her brain is so much better off than her scary and vague diagnosis of "Other Specified Disorder of the Brain" would lead you to believe! No hydrocephalus, no permanent brain damage and no signs of FAS! This little one's biggest issue is being in an institution! Being in a loving family would eliminate many of her current challenges! What excellent news!
The hard part will be initial bonding and bringing her home. She'll need at least one parent who can be with her constantly at first while she learns to trust her new situation and slowly explore her world. Most Home Studies (the first step in adoption) will offer or require classes on helping children from institutionalized settings. There is much hope for Anastasia!
As far as her arthrogryposis, the weakness sounds like par for the course, as most kids with AMC have muscle weakness. Anastasia has never had any intervention that we know of so she'll be starting from the beginning. Of course she's only a little over two years old and there is still time for intervention to have a huge impact. Her muscles can be strengthened, and often naturally are throughout a normal day once she's removed from a crib in an institution setting. Remember kids in institutions do not have toys to play with or everyday stimulus that other children receive. I'd love to see this girl with a ball! A little time in a loving home with one ball will be what her core muscles need to hold that head up high!
Based on this new information there is no reason to believe that Anastasia would not one day be independent in her daily activities with good physical therapy and a loving home. If her shoulders are not externally rotated (if I'm reading that right) then physical and occupational therapy on her upper body will also be easier, and her range of motion may be greater. I hope a family finds her soon!
Please share this beauty and her story. You never know who will see this and just maybe her family will find her.
