Tuesday, January 7, 2014

About Hannah & Amazing Hannah Video #2!

The time has come to share the second amazing video of our sweet daughter! In order to understand just how incredible it is, I think you have to understand Hannah's medical needs and background.  This video clip, while short, shows that Hannah is a strong, determined and accomplished little girl!

We are adopting Hannah through China's Waiting Child Program, or special needs program.  When we signed up for the program we indicated what medical conditions we felt comfortable with, and with limited knowledge we checked off 'arthrogryposis' on our list.  We must have been one of the only families who were open to it since our very large agency matched Hannah with us first.

Hannah was born with bilateral club feet and AMC, or arthrogryposis mulitplex congenita.  Most people have never heard of AMC, and honestly most of what we have learned has been since we reviewed Hannah's file and said 'absolutely yes!' to her as our daughter.  To explain briefly I'll borrow from the AMC support website:

What is Arthrogryposis Multiplex Congenita (commonly called AMC)?

Arthrogryposis Multiplex Congenita is a condition that causes many joints to be stiff and crooked at birth. A newborn with Arthrogryposis lacks the normal range of motion in one or more joints. A joint that lacks normal range of motion is called a joint contracture. These joint contractures develop before birth (prenatally) and are evident at birth (congenitally). Arthro means joint, Gryposis means crooked, multiplex means multiple and congenita means existing at birth or present at birth. Arthrogryposis Multiplex Congenita is an umbrella and descriptive diagnosis. This means Arthrogryposis can be caused by an underlying condition or syndrome. This underlying condition is usually the type of Arthrogryposis.

No two people with AMC are affected in the same way.  There are actually 400 types of AMC!  For Hannah, we know that her ankles/feet are affected, hence her bilateral club feet at birth, and that her wrists are affected as well.   We have studied every photo we have of her and suspect there could be some issues with her hips and knees as well.  We are lucky to know that Hannah can bend and straighten both her knees and elbows.  Many kids with AMC cannot.

Here is a picture of our sweet Hannah in the world's largest diaper.  I'm guessing she is approximately 2-3 weeks old here, so only a few days after she was found in her birth city.   Unfortunately she appears to be doing a 'hook em horns' hand gesture, maybe due to joint contracture, so we hope to improve on that ;)  This picture shows her ankle and wrist contractures.

As I've mentioned before, Hannah was blessed to receive medical treatment from two different organizations in China.  The first, Little Flower, performed serial casting on her feet followed by utilizing a brace for up to 23 hours a day to help correct the placement of her feet.  This method is called the Ponseti method and is a hugely successful, non-surgical way to correct clubbed feet.  Hannah will likely need to wear the brace (which looks like a little pair of shoes with a bar in between) while she sleeps until she is in preschool.

 Hannah on the left in her Ponseti brace- guessing 4-5 months old?

After her bracing and casting was completed, Hannah went to live at another fantastic, loving group home called Eagles Wings.  She was loved and cherished at both foster homes and we are eternally grateful for that.

One of her caregivers took this precious video of Hannah crawling in one of the rooms at Eagles Wings.  When you understand what physical limitations her body has and the challenges she is up against, it is absolutely INCREDIBLE that our baby girl has the strength to pull herself across the floor all while wearing her brace.  We are just so in awe of her!  My favorite part of the video (which I have watched over and over and over!) is when she pauses and turns her head to look straight at the camera :)

We know from one recent orphanage photo that Hannah can stand up in her crib.  We don't know if her orphanage has been compliant in bracing her feet or if her feet have regressed, but we do know Hannah has met a developmental milestone while there and we are thrilled with her skill and determination.  We cannot wait to see all that God will accomplish in the life of our Hannah!

Under normal circumstances, I would not publicly discuss our daughter's medical needs.  Because her needs are visible to anyone, I wanted to use this opportunity to educate others on her medical condition and share all she has been through and accomplished.  For more information on AMC, here is a great FAQ page:


1 comment:

  1. Wow! A video! How wonderful that you have this. She is looking great. I am very excited for you. Feb 10 will be here soon!