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!

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...

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.  Not.one.thing.  And remember, that no matter how busy you are, it is well worth your time to stop and smell the roses.

TO GOD BE ALL GLORY!

Day 1 at Gillette

What an amazing day!  We met our personal taxi driver at 9.  That's right, we've got our own taxi driver :)  Kamish drove us from the airport yesterday, and once he learned why we were here, he offered to drive us to all our appointments and back for a flat rate!

So we loaded into his van, and after putting my back out lifting Kasidi into her seat, we headed to our first set of appointments. 

First, after Katie took all sorts of measurements, Kasidi walked for the special cameras.

Next, Katie and Nancy attached sensors for the special video equipment to record Kasidi's movement.

Katie told me to be sure and use my flash so it would pick up the bedazzle!

Lastly, Kasidi chose a movie to watch for 10 minutes while her resting energy level was recorded.

Then, Kasidi, Katie, Daddy and Too took a 6-minute walk to measure her energy use under exertion.

After working hard all morning, Kas had a short break for oatmeal from the coffee shop, and then Kamish drove us to the Burnsville clinic to see physical therapy.

Again, she worked super hard, and did everything asked of her.

So when she asked for rice noodles for an early supper, rice noodles it was!

Tomorrow we return to the Burnsville clinic for x-rays and to meet the team of neurosurgery, PT and physiatry to get the results of the tests and their recommendation for treatment.

And then we will process all we've learned as we fly home...

Thank you for praying!