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...
