Monday, October 17, 2016

A New Journey

 We are embarking on a new journey.  New for us.  Many have gone before us, and we are so thankful for their experience and wisdom.
These tiny feet get so many kisses!

Several years ago when we were going through the 'checklist' of medical special needs we thought we could handle in the adoption process, we added clubfoot to the growing list.  That never came to pass, until our newest treasure, who has bilateral clubfoot (BCF) and hip dysplasia, probably related to spina bifida (SB).

As a bit of background, on August 24, our little man underwent a lumbar spinal detether and debulking.  He has a lipoma that extended into his spinal column.  Our neurosurgeon didn't know exactly what he'd find in terms of the nerves, until he went in.  If the nerves were entangled in the lipoma, the outcome wouldn't be as good, and there would be more risk of damage.  

Fortunately, the nerves ran through the lipoma and the nerve endings came through the bottom of it, so Dr. M was able to remove the bulk of the lipoma that was against the spine and secure the integrity of the nerves!

Post-op recovery went better than expected, except 24 hours after discharge we were readmitted for infection.  The complications resulted in five weeks in and out of the hospital to treat the infection with IV antibiotics and finally a reaction to the antibiotics.

We are home now, and little man is doing amazing!  He's slowly regaining the strength he had prior to surgery, and he may have increased sensation in his legs and feet as a result of releasing the spinal cord!

But that's not the 'new' part.  We've been through that with another of our treasures.
Isn't she darling!
The new journey will begin this Friday.  Phase I in treatment of BCF for our treasure is serial casting.

Our orthopedic surgeon saw him while he was still in the hospital and would have begun casting then, but he still had the rash, so that wasn't an option.  We're experienced serial-casting parents :), but not with casts that go mid to upper thigh.

I decided to blog the series of castings to chronicle the treatment and outcome just in case my memory fails me.  

As I said, we are so grateful for other parents who have gone before us!  They have offered so much encouragement and wisdom as we begin this six-week journey right into December!

Life is chaotic and messy here, but it is life, and it is good, and I wouldn't change it for anything.  I don't take anything for granted.  I trust the Father, who has given life and given purpose.

We aren't scared, and we don't feel tied down.  We are incredibly blessed to have so much sweetness in our lives.

Whatever is heavy on your heart today, I'd like to encourage you that worrying won't change anything for the better.  Seek the best resources, build relationships, love well, and trust the Father.  Nothing escapes Him.  And remember, that no matter how busy you are, it is well worth your time to stop and smell the roses.


Monday, September 5, 2016

Back to the Hospital

So...we tried to manage the fever for 24 hours, and after contacting the neurosurgeon on call, we decided to head to the ER. 

His incision site was red, hot and swollen, so I thought we'd get a round of IV antibiotics and be on our way. 

Seven hours of sitting in the ER waiting room, and I called the NEURO on call.  Within 30 minutes we were in an ER room, drawing blood, starting
antibiotics and treating the 103 degree temp.  Not long after that, we were admitted... To 9152, the same room we had left 36 hours prior.

Kaison was on round-the-clock pain meds and antibiotics and seemed to be improving slowly.  Two days later we were to be discharged.  Home health was arranged to assist with two-week antibiotic infusions, we were packed and ready, until I picked up my boy, and his incision started draining. 

So instead of home, we headed to the OR for a washout of the wound.  That was Fri, Sept 2.  

Today, Mon, Sept 5, is the first day my boy has looked better!  He has set in a chair, taken a wagon ride, and eaten. 

 But we are still waiting for conclusive results in the cultures so we know exactly what to treat and how to treat it. 

Maybe tomorrow, Maybe Wednesday.  We don't know.  But we know we are where we need to be and we are trusting the One who loves Kaison Joel even more than we do. 

Thank you for your continued prayers. 

Here We Are

A quick update from the hospital.
Kaison is improving, but we truly appreciate your continued prayers.
His first lumbar lamenectomy to detether and debulk was Aug 24.  Surgery and recovery went very well, and he was discharged Aug 28.  Then the 29th he started running a fever...

Friday, June 17, 2016

Our New Site!

Y'all, feel free to hop on over to our new site!  You'll find every post from this site, plus more.


Thank you for following our journey of life!

Tuesday, June 7, 2016

Stay Tuned...

One More Lady Bug is getting an updo!!
We are so excited to share with you soon!

Friday, June 3, 2016

I Want to Blog...

Every day I think of a new blog post.  And I want to blog.  
About our trip.  
About Kaison's transition.  
About all that God has done.  
And I will blog.  Eventually.  For now we have much life at hand.

Brothers sharing a passion for books

Medical appointments

A little hiccup in recent casting 

Surgeries coming up
Oh, and babysitting grand-pups

Getting to know one another
Spending time with the older married siblings - what a blessing!
Planting and preparing for sweet corn season.
Just generally trying to find our normal.
And hiring someone to update the blog.
I will blog.  For real.  Very soon.


Monday, May 16, 2016

Catching Up!

We unpacked the Play-Doh before we left Zhengzhou...

And it was a hit!
So was Dinosaur Train.
And do you notice the different outfit?  Little man was reluctant to take a bath, but once he was in the tub, he could have stayed forever!  So then it was only appropriate to change clothes.

He actually let Mama hold him for breakfast...once.
We said goodbye to Danielle and Zhengzhou.
And little man took his first flight!  He did amazing!
Checked into the Garden Hotel in GZ, and Dinosaur Train still works :) 

Saturday morning was the medical exam, and I really wanted to take Kaison by myself.  I wanted to give Daddy a break, especially for his back.  Daddy handed him off to me as we walked out of the hotel, we were whisked onto the bus, he whined for a second and then all was well.  He was a dream!  The medical exam went much smoother than expected, and little man let me comfort him after his TB blood draw.

That night we visited our favorite noodle house.  They serve the best wheat tea!

We strolled back through the garden.

Sunday was the first time Kaison woke up happy.  Really happy.  He wasn't disoriented.  He was happy!
We were blessed to attend International Church as a group!
After church we went to Shamian Island, and after a little shopping, we enjoyed lunch at Lucy's.
Lucy's has the best chicken congee!
This is the view from our room!
Monday we went to the zoo.  It was a long walk for Daddy with little man in his arms, but we all enjoyed it.

And on the way back to the hotel, another first!  He buckled without a struggle.  *thinking of the 2-hour car ride from the airport here*

This afternoon we opted to stay in so Kaison could get the nap he really needs.  Four hours so far...
We really appreciate your prayers.  Each day is better and better!


Thursday, May 12, 2016

The Day We Visited His Birth City

From the moment we found out we were required to make a 4-hour van ride to Kaison's birth city to apply for his passport, we dreaded it.  After all, 8 hours in a van... but it turned out to be a really amazing day!

We left the hotel just before 9, and somebody was ready for a nap.

We had an early start to the day.  Little man clinging to his Baba, and his Baba clinging to the Word of his Heavenly Father.

Then little man came alive.  He played and played.

He took selfies.

Once we entered the city, we discovered the police station where we would apply for the passport was closed for a 2.5 hour lunch break.

So we enjoyed our own lunch.

We finally took care of the passport business and had a photo opp with the orphanage staffer.

A 4-hour return trip, and we were ready to call it a day.  Except somebody needed a bath.  It wasn't exactly what he had in mind, but once in the tub he was completely on board!  We changed his clothes and scrubbed him up all in one evening.

By far, the best thing that happened today was this!!!
At lunchtime little mister was his joyful self.  We see a little more of him each day!


Wednesday, May 11, 2016

Officially Forever a Johnson

On May 11, 2016 our littlest man officially became Kaison Joel Johnson, forever a son and brother!

We truly appreciate your prayers!  Every day we see progress.  With progress comes regress as well.  We may get giggles and talking for 20 minutes, and then we get a brokenhearted little guy.
This was our progress on Tuesday morning: he let me carry him!


But he soon returned to his sullen self after breakfast, especially when we entered the civil affairs office again.  Bittersweet.

We praise God that Cho-Cho is forever our precious son!
Always near his Baba...
he might let Mama feed him :)

His ability to trust will take time.  We know he will be okay.  He doesn't know that yet.  We know we have his best interest at heart.  He doesn't know that yet.  We know he is fiercely loved.  He doesn't know that yet.

Baby steps, precious boy, baby steps.  Please continue to pray, dear friends.


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