Beautiful Stephanie

Meet beautiful STEPHANIE!

Age: 9

Stephanie is described as active and optimistic, sensible, cute and she talks a lot. Stephanie gets along well with other children her age and she likes to watch cartoons, and play with Lego's. 

Her favorite snacks are potato chips, jelly, chocolate and cake! She can express her needs well to adults and often helps her teachers and classmates. 

Stephanie’s teachers report that she is a very clever child. They hope a family will be able to give her more love and care.  She has diagnoses of thalassemia, iron deposition.

 Stephanie's video:

 https://vimeo.com/226153883

Password: stephanie

*Please keep in mind that several families may be reviewing this child’s file at one time. At any given time, this child’s file can go on hold or be taken back to the Shared List by the CCCWA. Please contact your Lifeline social worker or Lisa Kelly at lisa.kelly@lifelinechild.org for more information.*

Handsome JET

Name: JET!

Gender: Male

Age: 10

Country: China

Diagnosis: Congenital left tibial pseudoarthrosis

Jet is outgoing, and all his teachers love him. He is polite to strangers and really likes to be clean. He is also described as energetic and impatient sometimes. 

Jet is talkative, gets along well with others, enjoys playing with toys, is energetic and fond of singing. 

What a precious young man! Will you join me in praying his family finds him soon!

Here are 2 vidoes: 

https://vimeo.com/225994548

https://vimeo.com/225994559

Password for both: jet

*Please keep in mind that several families may be reviewing this child’s file at one time. At any given time, this child’s file can go on hold or be taken back to the Shared List by the CCCWA. Please contact your Lifeline social worker or Lisa Kelly at lisa.kelly@lifelinechild.org for more information.*

The Day It All Changed ~ July 7th

July 6, 2017 was like any other day.  We worked hard, then played hard with the kids before crashing early.  When my alarm rang at 2:30 a.m. for an early morning surgery check-in for our littlest guy, it was a new day.  Little did we know it was a day that would change our lives.

The China program director of our adoption agency had posted that CCCWA had implemented new policies, effective immediately.  (new policies here)

Something we had shared with only a handful of people is that after much prayer and the reminder that this life is not our own and we want to live it with no regrets, we were adopting again.  July 6 we were praying for PA, pre-approval, from China, to bring our newest treasure home in the coming months.

In the early morning hours of July 7, on the phone with my prayer partner, in the surgical waiting room, I got the call that changed everything.  Since our PA had not yet been issued, we were subject to the new policies, and were no longer eligible to adopt simply because of the size of our family:  we have more than five minor children in our home.

Before I go any further, let me stop to say that God is still on the throne, and He is still good, all the time.  He is not surprised, and He has not left us.  Nor has He left this sweet baby and so many others whose lives will be impacted by the new regulations.

While our hearts are shattered, and we can't stop thinking about the precious child we already love, we take some comfort in knowing we did all we could to give him a family, scrambling our way to the proverbial door before it was slammed shut.  Our hope is in Christ alone, and we take refuge in Him.

My flesh wants to cast blame and ask why.  After all, God moved mountains to get us to this point!  Would He really bring us this far, only to stop us in our tracks?  He very well may!  And He can.  He knows the whole story.  He will be glorified in His plans, not mine.  Maybe it was about the surrender, the commitment to prayer, the simple, "yes, Lord."  Or maybe He has something more in store for us.  I'm reminded of some of my favorite Elisabeth Elliot quotes:
 “Faith does not eliminate questions. But faith knows where to take them.”
“Don’t dig up in doubt what you planted in faith.”
“Of one thing I am perfectly sure: God’s story never ends with ‘ashes.’"

We have no right to ask why.  Maybe "What next?"  But not why. 

Since July 7th we've spent even more time in prayer.  Where do we go from here?  It would be so easy to simply round the corner and forget.  Forget all the children.  The children in China and around the world who desperately need the love of a family.  But we've seen them.  The images of children in poverty, lacking medical care, nutrition and love, those are forever etched on our hearts.

We don't have a large home, or a large bank account.  We do have a love for Christ that moves us to act, even when it seems foolish in this world to do so.  We are followers of Christ, and by God's grace, He has given us a gift of faith and a desire to live radically for Him.  

While adoption isn't for everyone, as Christians, we are given instruction in God's Word as to how we should treat others.

Matthew 19:21

“Jesus said to him, “If you want to be perfect, go, sell what you have and give to the poor, and you will have treasure in heaven; and come follow me.”

Zechariah 7:10

“Do not oppress the widow or the fatherless, the alien or the poor. Let none of you plan evil in his heart against his brother.”

Proverbs 14:31

“He who oppresses the poor reproaches his Maker, but he who honors him has mercy on the needy.”

Luke 14:12-14

“Then He [Jesus] also said to him who invited Him, ‘When you give a dinner or a supper, do not ask your friends, your brothers, your relatives, nor rich neighbors, lest they also invite you back, and you be repaid. But when you give a feast, invite the poor, the maimed, the lame the blind. And you will be blessed, because they cannot repay you…”

1 John 3:17-18(ESV)

But if anyone has the world's goods and sees his brother in need, yet closes his heart against him, how does God's love abide in him?  Little children, let us not love in word or talk but in deed and in truth.

James 1:27 (ESV)

Religion that is pure and undefiled before God the Father is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world.

Psalm 82:3-4(NIV)

Defend the weak and the fatherless;
    uphold the cause of the poor and the oppressed.
 Rescue the weak and the needy;
    deliver them from the hand of the wicked.

There are many ways to care for the needy.  Hoping they are okay, wishing them well ~ that isn't enough.  Our care is evidenced by our action.
Are we praying?
Are we giving?
Are we sending?
Are we going?
Are we serving?
Are we feeding?
Are we mending?
Are we welcoming?

Many incredible families no longer have the opportunity to care for the orphaned children of China by adoption under the new regulations.  But many families are eligible to adopt!  Are you one of them?

As for the rest of us, unless and until waivers are granted or the policies change, we will find new ways of caring, such as advocacy, fundraising for families, fundraising for life-saving surgeries in country and serving.

Adopting a child with medical special needs can be frightening.  Certainly, for our family, it was a process.  The choice to take on responsibilities we wouldn't have formerly considered, and certainly couldn't handle in our own strength, evolved over time.  It was a matter of prayer and growth.  

As God continues to reveal Himself by His faithfulness and sufficiency, our weaknesses become irrelevant.

I put a quote on Facebook that we strive to live by:

It seems that self, comfort and convenience are the going thing.  But are we most content when living for ourselves?  Don't we find more fulfillment in loving and serving others?  Will it be uncomfortable?  Maybe.  Will it be inconvenient?  Most likely.  Will it be worth it?  Absolutely!

The thing is, we don't all have to adopt.  According to this source, if only 6 to 7% of born-again Christians would adopt, there would be no orphan crisis!  Church, we will have to answer for what we've done, and for what we haven't done.

If the chief end of man is to glorify God and to enjoy Him forever (source), brothers and sisters, let's ask ourselves if that is indeed evidenced in our lives.

Will you join us in praying for the children who, on July 6, 2017 had a family, and then did not on July 7.  Let's pray for all the waiting children.  Pray for the families who are willing but are no longer able to give these children a family.  Let's pray for the families allowed to continue the process, that their children will come home.  And let's pray that the Father would touch the hearts of His people and raise them up to move on behalf of the orphan.

To Him be all glory!

Trust Your Mama Gut

If you're a mama to a cutie with spina bifida, you know their unique bodies are a complete mystery, and they keep us on our toes!

Add club foot to the mix, and it can make Mama a hot mess trying to keep up.  Or maybe that's just me.

We've had miraculous experience with SB, and we've had a crash course in both neurological issues over the past year.

I can't say enough how grateful we are for families who have paved the way and are a priceless resource and encouragement to us!

You know those times you think your kiddo might be sick enough to go to the ER in the middle of the night?  And then you begin to doubt your judgment.  And finally you decide to go. Then punkin' seems to improve on the way and you really start to question yourself.  You been there?

It's kind of like that every time I see changes in my kiddos' skin or in their gait, especially when they have limited to no sensation.  So far my gut has served me well, but not without the help of my mama friends who get it.  I'm texting pictures, wondering if I'm overreacting.  Self doubt? Yep. Second guessing? Yep. Even parenting for 28+ years doesn't change that.

But then for a split second I think, what if I can trust my gut. Because on this we don't want to be wrong!

I'm blogging as we are home bound .

One week ago, as in only 7 days, Kaison had what appeared to be a blister on his right heel.  We've dealt with sores on these tiny tootsies before, but this was new. So that very day we asked his physical therapist to take a look and give us direction. She wasn't concerned, so we stayed the course of daytime AFOs and boots and bar at night.

A few days later the blister opened so I didn't put BnB on at night in case that was the problem.  I was so proud of myself when I realized that little man's right foot was slipping out of his orthotic, but my gloating didn't last long after asking his PT to look again and she didn't agree. She didn't recommend any changes.

The very next morning our little treasure's heel looked like this:

We were shocked! Thank goodness I was able to text a photo to our nurse, just to determine if he needed to be seen. That day he was prescribed antibiotics and a follow-up.  Our orthopedic surgeon in St. Louis, Dr. Dobbs, wanted to see Kaison as well after seeing photos, but his staff knee it was a long trip for wound care.

Meanwhile, a good friend we met in the club foot world shared contact information for her kiddos' PT who is an expert in wound care. She happens to be in Wichita and doesn't take our insurance, but her years of experience and concern for the state of Kaison's wound after seeing photos warranted a trip. She could see us at 8 pm Thursday. 

At 5 pm we left home, drove into an ominous storm with lots of lightening and hail, and arrived at her clinic at 8:05 pm. 

Within two minutes of arriving, we knew we'd made the right decision.

Kaison has a stage 3 or 4 pressure sore, and will not be back in his orthotics for m.o.n.t.h.s!

We always worry about relapse when he's out of his orthotics, but healing this wound is most important. 

I am so thankful for friends who have experience, friends who are nurses, and friends who pray! And I praise God that He never loses sight of us!

Mamas, trust your gut. And your tribe💜

To Plae or Not to Plae?

We've had our GoPlae shoes for a couple weeks now.

I hear of parents who are able to find cheap shoes for their kiddos' AFOs, and well, I've never had much luck with that.  They don't seem to be deep enough to fit the AFO, they slip off the heel, or they won't fasten over the AFO.  I searched high and low for a shoe to fit Kaison's teeny footsies, to no avail!  He is a size 5, and most shoes that small have Velcro fasteners, which aren't long enough.

So, since our PT recommended these, we gave them a whirl!  I'll be honest, I didn't find the website incredibly dumb user friendly :)   It took longer than I had anticipated to navigate it.  And then to figure out how to use the Tab Lab, well, don't even get me started.  BUT, they do offer live chat assistance, and "Marla" helped me tons!

I chose the style that seemed deepest because of Kaison's thick feet, and then chose 1.5 sizes above his shoe size.

Next I went to the Tab Lab and chose an extra pair of tabs in size Large.  Really, the longer tabs are one of the things that make this shoe so awesome!  Well, that and the fact that they are feather lite!!  Oh, and kinda adorable!

I was so excited when the shoes arrived, I couldn't wait to try them on him!  At first I didn't think I'd get the AFO into the shoe, even though it is more than an inch longer than his foot.  Alas, I remembered the trick of pulling the insole out!  I was able to gently stretch the shoe over the AFO, and Kaison has been on the move ever since!

This is the Ty in the color Fire.  If this shoe wears well, I will order them again!  With two in AFOs, I look for ease, quality and light weight.  Oh, and style, when possible!  I think I've found all four in GoPlae!

Check them out here: GoPlae

Happy walking!

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!

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 :)

TO HIM BE ALL GLORY!

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...

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!