Tag Archive for: Arthrogryposis

I must confess that I am not particularly inspired to write a garden blog post.  

The reason for this is that my son, Kai, has been recovering from surgery.

Hip Surgery

Hip Surgery

Kai was born with a condition known as arthrogryposis, which affects some of his joints.  He was born with a dislocated left hip, which the doctors have been working on throughout the past 8 years.

Every few years, he needs to have additional surgery on his hip, which leaves him wheelchair bound for 6 – 8 weeks.

After 4 days at the hospital, we are now home.  He needs a lot of care at this point, so I will try my best to find some time to write.

Kai is a remarkable boy and I am so glad that he is my son.  He was abandoned by his birth parents in China when he was 2 weeks old and spent his first 2 1/2 years of life under the care of an orphanage.

You can read more about his story in a post I wrote about him called,

“The Sunshine of My Life”

Angelita Daisies

I love Angelita Daisies (Tetraneuris acaulis), and how their bright and sunny faces brighten my day.  But today’s post is not about gardening, but about a little boy who brings sunshine to my life every day.

I would like to share with you a story about this special little boy who has gone through so much adversity in his short life but who has blessed me so much….my son, Kai.

sunshine to my life

This was the first photo that I saw of my son, Kai.  He was abandoned by a river when he was just two weeks old.  He spent much of his early life in a Chinese orphanage and then in foster care.

We had adopted our third daughter, Gracie from China a year and a half earlier and had decided to adopt again.  As soon as I saw this picture, I just fell in love with Kai’s little face.

If you look closely, you may notice his feet turn inwards, a lot.

sunshine to my life

Kai had two club feet and club hands.  We thought that we could handle that, – our daughter Gracie had been born with a club foot and we went through surgery and rehabilitation just fine.  

But the medical paperwork from the orphanage also said that Kai had a dislocated hip…he was born that way.   

The news we heard from the doctor was not good.  The doctor suspected that Kai had a condition known as arthrogryposis, which can be caused when the birth mother’s womb is too small for the developing baby.  Hence, the club feet and hands and dislocated hip.  

The doctor told us that Kai would need multiple surgeries with lengthy hospital stays.  We were torn up by this news.  We were set to receive the papers from the adoption agency the next day to sign to formally agree to adopt him.  After a lot of prayer and talking to our daughters about what Kai would have to go through and what we would all have to do to help him, our entire family decided to go forward.  

While we were waiting to travel to China, we found out that Kai was from an orphanage that I had visited while in China adopting our daughter, Gracie a year and a half earlier.  So, I took out the photos of my orphanage visit and there he was….

Kai is in the back wearing

Kai is in the back wearing the multi-colored jumper.  You can see his club feet.

Our whole family traveled to China in January 2005 to go and get Kai.  We were so excited to meet him.  But, he was not sure about us…we definitely did not look Chinese and he was missing his foster mother.

2 1/2 years old

Kai was  2 1/2 years old.  He is holding the little red train we gave him.  He had a bag of candy given to him by the orphanage director in the other hand.

It only took about one day for Kai to fit into our family and he was absolutely inseparable from his new dad.

sunshine to my life
Guangzhou, China

Pushing two strollers in Guangzhou, China.

Aren’t the flowers beautiful?

First day home after our trip to China

First day home after our trip to China.

Kai fit into our family so well and I quickly learned how different boys were from girls.  Because of Kai’s club feet, he walked on his ankles.  It was amazing how fast he could walk.  He couldn’t wear shoes, only slippers.  

We were referred to a specialist for Kai and decided on the first course of treatment, which would be to work on his club feet.

Recovering from his first surgery

Recovering from his first surgery.

casts off

At the doctor getting ready to get his casts off.

Kai wearing shoes for the first time

Kai wearing shoes for the first time.

casts off

A few months later, recovering from his second major surgery.  His hip was moved to the correct place and pinned.  The lower leg bones were cut so that his feet could be turned outwards.  Kai was in this cast for 6 weeks.  As you can see, he did not let it slow him down.

Back at the doctor

Back at the doctor, ready to have this cast removed.

wrestle with his dad again

Cast off and now wearing a brace.  Now he was able to wrestle with his dad again.

Notice the left leg

Notice the left leg?  One day after getting his brace off, Kai accidentally pulled his sister, Gracie, on him and his leg broke.

sunshine to my life

Cast is off and now to learning how to walk again.  Kai ditched the walker two days later.

For awhile, Kai was able to run, jump and wrestle like most boys his age.  But, a check-up revealed that his hip wasn’t healing as well as expected, so another surgery had to be scheduled 1 1 /2 years later.

sunshine to my life

On the way to the hospital, yet again…May 2008.

sunshine to my life

Summer vacation, stuck in a wheelchair, but Kai made the most of it.  He caught 3 fish in one day.

sunshine to my life

Getting ready to race his cousins.  Kai’s favorite superhero “Super-Duper” made a surprise visit and pushed Kai in his wheelchair.  Kai won.  “Super-Duper’s” secret identity, is Kai’s uncle Brett.

 Kai recovered from that surgery quite well but will have to wear AFO’s (braces on his feet and lower legs), for the rest of his life.  He walks and runs with a limp.  Kai cannot run as fast as his classmates and is beginning to notice that.  He always wears long pants now, because he doesn’t like it when people stare at his braces.

Over Christmas, I was reading a book to him about a little lamb that had a limp, but was very special, just like him.  Kai was surprised that he had a limp….he didn’t know that.  I thought that he did.  But, it didn’t seem to bother him after he found out. 

A couple of months ago, we received the news that Kai needs another hip surgery.  We were dismayed at the news, although we knew that Kai would probably require additional surgeries during his life.  But, he is just such a normal little boy that it is so easy to forget that he even has special needs.

He will be confined to a wheelchair again for 6 – 8 weeks.  Since Kai cannot put any weight on his hip we have to take care of most of his basic needs during that time and do a lot of lifting and carrying.

Today is Kai’s eight birthday, and tomorrow he will be in surgery.  But for today, we celebrate…

I know that Kai will meet this challenge as well and continue to display the resilience that continues to amaze me.  Before we know it, he will be back to wrestling, running, riding his bike and scooter. 

I would appreciate your prayers and thank you for letting me share about my son.  I promise I will soon be back rambling about my desert garden as well as other gardens I encounter 🙂

Our “New” Normal Life….