Tag: adoption

ARTHROGRYPOSIS ADAPTATIONS – PLAYGROUND PART 2

Last week we began a lifelong journey. Our girl, home three months, had her first evaluation in the United States to begin a specialized treatment plan for her arthrogryposis.  We visited the Shriner’s Hospital closest to our home, about 2 1/2 hours away.  Shriner’s is a leading expert on orthopedic conditions , and specifically treat children from birth to age 18.  We had heard great things about them preceding our visit, and all were justified.  This place is amazing!

It was wonderful to sit down and talk with doctors who are familiar with this condition.  Because it is fairly rare, many doctors have never treated someone who has arthrogryposis.  They knew just what questions to ask, what x-rays to take.  They taught us what to keep an eye out for, and what to stop worrying about.

Generally speaking, all of the experts were in agreement.  Our daughter is amazing.  Through her six years, she has developed many techniques that work best for her own body.  She has adapted beautifully.  Considering she had essentially NO treatment for the first 5 years of her life (typically babies born with AMC will begin casting and intervention just a few weeks after birth), and the fact that she has been walking for less than a year, they were quite pleased with her range of motion and muscle strength.

There were a few surprises too, however.  It appears {K} has a slight bit of curve in her upper spine, the start of scoliosis perhaps.  The pediatric orthopedist mentioned that nearly 25% of arthrogryposis patients will develop scoliosis over time, simply because of the way their bodies compensate for alignment differences.  It is possible that this curve developed for {K} before she had her hip surgeries, and perhaps now that her hips are in alignment her spine will remain stable.  We are following a wait and see approach.

She was able to pick a toy for being so patient during X-rays.  It was no surprise that she chose something Hello Kitty related – girl loves her some Hello Kitty!  The puzzle was a great distraction for her while waiting.  Win-win!

The specialists also noted that her left wrist may merit some intervention.  It is currently mostly locked in a downward position, but she has amazing grip with that hand.  They feel that by unlocking that wrist she would have an easier time with self care tasks, such as dressing and grooming.    They sent us home with a hand brace/splint that they recommended she wear at night and for short periods during the day, to help stretch the wrist ligaments.  On our next visit, six months from now, we will meet with a hand specialist who will talk us through some options for the future.

{K} was fitted for some new AFOs (ankle foot orthotics) since her feet are growing and her toes are creeping over the edge of her old set.  She was pumped that they let her pick out her own color and pattern for the new set, and chose a butterfly option.  We will go back in a few weeks, once they are made, to try them on and do a final fitting before bringing them home.

Most of all we are just so, so happy that {K} will be able to start school this Fall with no limitations and no surgeries on the horizon.  A chance to be just like all the other little kids in her kindergarten class. The ability to have fun and play at recess, just like everyone else.  She has already mastered the ladder/slide combo!

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Again with the amazing grip – am I right?!?  The hanging on the bar before going down the slide?  All her idea.  This girl will move mountains!

YOU SAY GOOD MORNING

Every night as I tuck {K} into bed, she says to me ‘You say good morning’- not so much a question as a statement. A fact. I am quick to answer ‘Yes.  I will say ‘good morning!’  It is a little way that she reminds herself that even though she is closing her eyes now, when she opens them her family will STILL be there.  Precious words from a child newly home and still learning what family is all about.

This past week found us in many waiting rooms.  Waiting to see specialists who would begin evaluations for what will be years of care.  She has already been through so much, and will continue to be faced with many challenges. More on that tomorrow.

After the appointments we were able to meet up with some very special people who knew our daughter long before we did.  The incredible family who fostered her while she was living in China (and coincidentally live only a couple hours away from us now!) and the sweet doctor from Shanghai who lobbied to get {K} the care she needed, the care she deserved. These people are so, so special to us and there will never be enough thank you’s to properly acknowledge how grateful we are that they stepped up for our girl, saw her worth, and were willing to fight for her. The fact that we were able to break bread together and see everything come full circle is nothing short of an orchestration by God Himself.  We are so blessed.

We were a bit worried though, that seeing these people from her past may set her back a bit – confuse her.  Worried that all of the doctor’s appointments might scare her and cause her to lose trust in us.  But God showed us, once again, that he is making beauty from ashes.  Through it all {K} held strong, she looked to us for reassurance, she leaned on us for comfort, and really seemed to understand that we were going through it all WITH her, FOR her. She understood that at the end of the day we were going to bring her home and back into that same bed in the evening, where we would tuck her in and she could once again say ‘You say good morning’. Our bond is getting stronger.

 

A reminder, if you ever want to catch up on what our family is up to – you can check out our family YouTube channel!

ARTHROGRYPOSIS ADAPTATIONS – PLAYGROUND

Raising {K} these past 3 months has been a complete eye opener, a game changing experience.  Never before as parents have we been faced with as much emotion over a child.  The low lows and the high highs.  She is the first of our children that we have seen struggle physically.  If you have been reading this blog you know that {K} has arthrogryposis (AMC for short).  It affects her ability to bend many of the joints in her body.  Because it is fairly rare, (1 in every 3,000 births) most people have never heard of this condition and are taken aback the first time they see {K} moving around.  In photos it is easy to find the ‘right’ angle, position her body just so… make it look like nothing is different.  But things are different, and that’s OK. This is real life.

Each time that our family is out in public, I can see people watching her.  I don’t think she notices… yet, but sometimes it does bother me.  I always try to take a step back and remember what life was like before this diagnosis became part of our every day.  If I had seen someone moving the way she does, tackling things in their own special way, would I have been the one sneaking peeks?  Probably.  It’s not necessarily done in a mean or mocking way. People are curious.

When we first committed to adopting her, we scoured the internet – searching for videos of children and adults living with arthrogryposis.  We were curious.  Were they living full, happy lives?  Were they able to feed themselves?  Drive a car?  Go to school?  Did they marry?  Have children?  We found some videos, but not many. And so, knowing that there may be others out there who are either considering adopting a child with AMC or have just been given the diagnosis as a new parent and could use the encouragement, I am going to be starting a series of videos that showcase how adaptable people with this condition really are!  In fact, as I will write about at a later date, I really hesitate to call arthrogryposis a disability.  People living with it may do things a bit differently – but they are ABLE!  I also want {K} to look back when she is older and see how far she has come, how much strength she has gained.  She learned to walk at 6 years old (just a little over half a year ago) and there is no stopping her now!

Keep in mind that each person with AMC is affected differently.  Some may have very little function in their upper limbs, others may not have use of their legs.  Many, like {K}, are affected in most joints on a less severe degree. Probably {K}s biggest challenges are her knees and shoulders.  She can bend her knees about 15-20 degrees at this point (though she is gaining more flexibility the more she uses them!).  Her shoulders do move, but not in full rotation.  She can not lift her hands actively above her head.  They can be pulled into that position, but will not remain there when she isn’t grasping onto something.  Her biggest strengths are definitely her iron will/ determination and her super strong grip!  Mark my words, that girl will be swinging on the monkey bars before too long! She can hang on SO tight!

Here she is from yesterday’s trip to the playground.  This particular piece of equipment is a tower like structure that at the very top is over 6 feet above the ground.  We have worked on it for weeks and weeks to figure out the best way that she could approach it, and she has gained confidence enough to climb from bottom to top on her own (I started the video late, when she was already part way up).  While videotaping, I was standing close by – one hand ready to catch her if she fell. She didn’t.

I recently found this New Zealand documentary that shares the stories of people living with arthrogryposis.  It’s a great one to watch if you are curious about this condition and it does a wonderful job of explaining the thoughts and feelings of people living with it.

I look forward to adding more videos to our YouTube channel, to document every day life with arthrogryposis.

HEROES

They come in many shapes and sizes.  Lately, my hero is a tiny 6 year old girl who has been living in a non-cooperative body her entire life, but has never let that fact dampen her spirit.  A girl who only took her first steps months ago.  A girl who recently left all that she has ever known in a country far away to start a new life in America with her forever family.  A girl who continues to amaze her family and others with her strength and determination. Our girl.

I had the pleasure of sharing {K’s} story on the well known China adoption advocacy website No Hands But Ours.  You can read her story here.  Arthrogryposis is so much more than a scary word.  If we had not seen the child past the medical diagnosis, we would have missed having this hero living in our midst.

SCHOOL READINESS BASICS

When {K} was first home a month and a half ago, I looked into getting her in a ESL (English as a second language) summer program.  In our town however, the programs available were either for adults or were day long in a summer school type setting.  Because we are still knee deep in cocooning, we knew that full on summer school wasn’t going to work for us.

While talking with the coordinator, I found out that if {K} learned the basics such as number and letter recognition, counting, colors and shapes she would be in a good position to start Kindergarten come September.  Though not sure how it would all play out, I decided to take on the mommy/teacher role and since the end of April I have been going through some preschool basics with both girls.  I have found that it has been highly beneficial for both of them – in fact, training them together has provided us all with some good bonding time.  They have already come so far!  We have made it through numbers 0-10 and letters A-O, and also have a great start on colors and shapes.  I am thinking that we may even be able to sneak some basic sight words into the mix come the end of the summer.

Though teaching is definitely not in my comfort zone and is not my gift, I have surprisingly enjoyed being there for the girls to help them get a great start on school!