Friday, January 27, 2017

Chinese New Year 2017 - Year of the Rooster...and Tea Eggs

I'm not so good at preparing Chinese food, I admit, but there is a favorite of my kids that I have mastered - TEA EGGS!

Tea Eggs
6 eggs
5 Tbsp soy sauce
2 tsp salt
2 tsp sugar
2 black tea bags (or 2 Tbsp of black tea leaves)
1 tsp Anise
1 stick cinnamon
Several grinds of black peppercorn
Place the eggs in a saucepan with enough cold water to cover.  Bring to a boil, and then simmer for 2 minutes
Remove the eggs from the water, and using a knife, tap each egg to slightly crack the shell in several places.
Return the eggs to the saucepan of water, and add the rest of the ingredients.
Cover and simmer for 3 hours, adding additional water as necessary.
I let the eggs sit in the water till it's room temp, and then refrigerate them.
Peel, rinse and enjoy!

Saturday, January 14, 2017

Part Two ~ A Story Only God Could Write

If you haven't already done so, you might want to read Part 1 before proceeding.  

The rest of the story:

In December 2016, when we saw Dr. Dobbs at St. Louis Children's Hospital for Kaison's bilateral tenotomy follow-up, we consulted him for Kasidi's spasticity as well.

Dr. Dobbs is an amazing orthopedic surgeon whose specialty is predominantly treating kiddos with cerebral palsy, spina bifida and clubfoot.  People literally come from around the world to see him.  He offers hope to many families who have been told their child's legs require amputation due to complex clubfoot and other issues.  

Please don't misunderstand me, there are other great pediatric orthopedists, even here in Oklahoma!  But with Kaison's complex bilateral clubfoot and delayed treatment, we knew after corresponding with Dr. Dobbs that our greatest success would likely come from his vast experience.

Kaison after only 2 castings!

So after doing all we could to address Kasidi's spastic muscles, we sent video and pictures to Dr. Dobbs, and he assured us he could help her!

Until we actually saw him, we didn't know what he had in mind.  More serial casting?  Rhizotomy?  Muscle relaxers?  Nope!  He said he's had success with lengthening the hamstring and the heel cord in kiddos like Kasidi.  He further explained that it would be a simple surgery with an overnight stay, and she would leave the hospital bearing weight on walking casts!  Seriously?!?

Our only hurdle with Dr. Dobbs is that he doesn't take our insurance.  The hospital does, praise the Lord, but not our physician.  Soooo we had scraped together the thousands of dollars needed for Kaison's many trips to St. Louis for casting and surgery right before Christmas.

We've had Thanksgiving and Christmas bake sales, sold poinsettias and anything else that wasn't nailed down to raise the funds.  Another surgery that costs even more seemed daunting, but in faith we scheduled it for January 19, 2017.

So lean in and listen to just a few ways that God has intervened in a way that only He can!

While on the road to St. Louis with Kasidi and Kaison in December, Clayton received a phone call that would prove significant in ways we couldn't have imagined!

A couple who had befriended us in recent months were at our home with a special delivery.

Seriously, wow!  They were sharing our story at church and another couple, overhearing, wanted to bless our Krew with a giant gingerbread house.  They were delivering it, but we weren't home to hug their necks in thanks, so they left it for us.

When we returned from St. Louis the next evening we took pictures of the kids piled around the house and emailed them with a note of thanks to three couples responsible for this huge blessing.

One of the families, K&CW, replied to our email and asked if they could do anything for our family.  We asked that they pray for Kasidi's upcoming surgery.  Of course, they were happy to pray!  They also wrote: "Our private family foundation is glad to consider any need you might have.  If you can reply with a written request, it will be presented at our next meeting. "

Surreal.  I asked my prayer partner to join us in praying for discernment.  In the end, we sent this email: "We would be humbled to be considered.  
We are raising funds for Kasidi's upcoming surgery of a tendon and hamstring release which will be life-changing for her!  Dr. Dobbs at St. Louis Children's Hospital will perform the surgery, and our share of the cost is $XXXX.  Even a small donation from your foundation would be such a blessing and encouragement for our family!
Dr. Dobbs has changed our newest son, Kaison's, future with the recent casting and surgery he performed!" ...

And then we prayed.  For peace.  For provision.  For the energy to hold more bake sale fundraisers.  And for more peace.

Jump ahead to this week.  We've prayed fervently for guidance as to whether we should postpone next week's surgery.  I even asked for unspecified prayer on Facebook on Tuesday.  Three hours later we received an email that a check had been sent from this family's private foundation!  We didn't know how much or when it would arrive, but GOD had definitely intervened!

On Friday we found out the check covered more than half the cost of the surgery!!!  We praise God and we thank this family from the bottom of our hearts!  Even with our bake sale proceeds and this incredible gift, we were a few thousand dollars short, so we called Kathy, Dr. Dobbs'  coordinator, to discuss rescheduling.

To our surprise, she informed us that Dr. Dobbs would perform surgery as scheduled next week anyway, and we could make arrangements to pay the balance following Kasidi's much needed surgery!

Y'all, we can't make this stuff up!  Only God can speak to the hearts of His people and cause mountains to move.

So Friday afternoon we began to scramble to find someone to make the near 10-hour trip with me, because my dear hubby won't let me take two kiddos alone.  And we felt it would be more practical for him to stay home to care for the other eight in my three-day absence.  After all, we've relied on the same four people to watch our kids each time we've made the trip, and this just seemed like too much to ask.

Once again, the LORD spoke!  My two brothers are married to awesome gals, and I call them my sisters.  One still has littles at home (Ashlie), and the other is an empty nester (Sheri).  I called Sheri to see if she'd be willing to make the two-hour drive to our house and then another ten hours to St. Louis - ha!  She had a better idea - both she and my brother would stay here to care for the kids, and Clayton and I could make the trip together!  Seriously?!?  

At this point I should mention that Sheri traveled with Kenzie and I to China in May of 2011 to get Kennah and Kasidi.  What a coincidence God thing!

So this Wednesday, January 18, my hubby and I, along with Kaison and Kasidi, will be on our way.  We will stay with the amazing friends who have treated us like royalty every time we've made the trip, by putting us up in their carriage house yet again.  Oh, and we met them when we traveled to China together in 2009!

So, only God could write a story like this.  We just happen to be along for the incredible ride and have the blessing of watching our children grow up with all the potential God gives them.

And when you see our fliers for bake sales, like Valentine's, Easter, Mother's Day, Father's Day, the wind is blowing day, you will know it's for a great cause :)


A Story Only God Could Write

Honestly, I don't even know where to start!  I may have to break this up into two posts.  

2016 was kind of a whirlwind for us.  In fact, we are still spinning.  We keep our eyes on the present, barely looking forward at the overwhelming schedule, and rarely looking back.  

This will be one of "those" weeks with two long-distance doctor's appointments and then a 3-day trip for surgery, so what better time to reflect on all that God is doing!  

So it all started like this...

Everything about this girl is miraculous, from surviving her first moments of life, placement into a caring orphanage where she received immediate surgery for her thoracic meningocele repair, foster placement with a family who obviously loved her dearly, our family getting her file (that was a fervent 24 hours of praying that we'd actually get it locked!), and all that God is doing in our lives since she came home at 18 months in May of 2011!

Before ever holding her, we gave her the middle name "Joy", only to find out later that part of her Chinese name actually meant Joy.  It's obviously fitting!

We were newbies to the medical need of spina bifida, and it was no mistake that the first Sunday we attended church after her homecoming, a young family visited for the first time.  They happen to have a son with SB, and our friendship has been solidified in so many ways!

It is common for a child who has spent her life in an orphanage to have delays, from emotional to physical, so the fact that Kasidi was neither potty trained nor walking at 18 months was no surprise to us.  In fact, no one knew what effect the high meningocele would have on her physical development, and it was suspected that she would never potty train nor walk independently.

So we began stumbling our way through the journey to help our little treasure reach her highest potential.  We started with Shriner's in St. Louis.  What an amazing group who care for children with many different abilities!

We saw the entire team, but our struggle was that we had no baseline for Kasidi and since time wasn't on our side, we needed to establish that immediately.

In the meantime, we started physical therapy with an incredible gal who came to our home weekly!  Her office even had a homemade parallel bar they were willing to loan us so we could get Kasidi on her feet!

 At our second visit to Shriner's in St. Louis, Kasidi got her AFOs and orthotic shoes, which helped as well!

 Our PT connected us with the best physiatrist ever (a doctor who specializes in orthopedics and neurology, generally an expert in the treatment and care of patients with spina bifida and cerebral palsy)!  This was gold!  Dr. Wright was able to streamline Kasidi's care by putting us in touch with the SB team at OU Children's.

After ordering a CT scan and MRI, Dr. Wright's primary concern was if Kasidi didn't start bearing weight on her legs, her hips would not set properly, which would cause future problems.  We also saw our neurosurgeon, Dr. Mapstone, who determined from the imaging that Kasidi had a tether in the lumbar region of her spine, and that was likely causing some spasticity.  

Although our little treasure has spina bifida, she has muscle spasticity (tightness) as is more commonly seen in cerebral palsy.  Imaging revealed no brain incident so CP was ruled out, but her treatment would be atypical for SB.

We used all kinds of things to encourage standing and strength building, like a cute pull toy for her birthday and a walker.

Thanks to the help of her Crocodile walker and Amtryke, at the age of three, Kasidi got on her feet for good!  
 We've used knee immobilizers for stretching, which seems to justify her watching TV for this mama.

 Look out, World, here comes Kasidi Joy!  Nothing can stop her! 

In 2016, both Dr. Wright and Dr. Mapstone told us it's not ideal to continue opening up Kasidi's spine, and since the botox was no longer effective, we needed to form a new plan for the spasticity.  Dr. Wright referred us to Gillette Children's Hospital in St. Paul, MN for the gait lab and analysis.

What an amazing staff and facility!  We met the team of neurosurgeons, orthopedic surgeon and physical therapist, who gave us valuable information!  We learned that Kasidi is not a candidate for the dorsal rhizotomy (a surgical procedure to sever nerve roots in the spinal cord. The procedure effectively relieves chronic back pain and muscle spasms.) or for the baclofen pump, both of which provide increased mobility for a certain population.

We were essentially back to square one.

 To date, Kasidi has undergone two spinal cord de-tether surgeries, many rounds of phenol and botox injections, serial casting and daily stretching for spasticity.  She's recently hit a growth spurt, and despite her 2015 de-tether surgery, she is experiencing severe muscle tightness and a crouched gait.

Since we've experienced miraculous success with Dr. Dobbs' treatment of Kaison's spasticity for bilateral clubfoot (related to spina bifida as well), we decided to take Kasidi for a consult in December 2016.

To be continued...

Sunday, January 1, 2017

That's How We Roll

This mama loves family photo sessions!  And it doesn't seem like a "family" photo without the 7 big kids, but getting all 18 of us together and dressed up has proven nearly impossible since the last family wedding, over a year ago!  The result: no family photos since Kaison has been home!

This has to change!  So we set out to get a family photo, sans big kids.  We were all dressed and at the Cousins'.  I even took my good camera.

There were 75 pictures taken, but this is a sample of our reality.  Fun times :) 

We love family gatherings, and the cousins always have a blast.  So whether memories were memorialized in pictures is irrelevant; they were made!

Happy 2017, y'all!

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