When a local friend asked me if I could help her friend tell the story of her son who needs an out-of-state surgery insurance won’t cover, I quickly realized sharing their story was the least I could do. Yes, it’s part adoption story, which we all know I love, but it’s also one that tugged at my momma heart regardless of how they became a family. In addition to sending the story to local media outlets, I wanted to share the story here too. I know many of your are quick to pray and encourage. This is certainly a situation that needs both those. If you’re inclined to help financially, that’s an option too.
MURRAY, Ky. – Like any mom, Micheala Toews just wants what is best for her kids. For one of her children, that means traveling regularly for medical therapies and scheduling an out-of-state surgery not covered by insurance.
Three-year-old Jaymin Toews isn’t mobile and doesn’t talk. At 27 weeks pregnant, his birth mom ended up having an emergency Caesarean section after multiple poor choices.
With no heartbeat, Jaymin was 2 pounds at birth in April 2011. Officially, he had severe hemorrhaging on both sides of his brain in the days after birth, leading to a Cerebral Palsy diagnosis.
Though he has exceeded expectations in multiple areas, the damage done to his brain significantly impaired his vision and motor abilities. At 3 years old, he is still unable to sit up, crawl, stand or walk.
Jaymin’s birth mom visited him once in the NICU and then he spent the next month and a half in the hospital with no visitors – until Micheala received a call about him being placed into foster care. That call alone was a miracle because typically children aren’t placed in the foster system until they’re ready to be discharged from the hospital. After 111 days in the NICU, Jaymin was finally able to come home – to Toews’ Calloway County home. In December 2012, Jaymin’s adoption was finalized.
“I fell in love from the very first moment I held that tiny bundle with paper-thin skin and a tiny hat that was far too big for his head!” the proud mom said. “Within a week, he had chubby cheeks. He knew someone was there for him.”
That someone is still here for him.
The current focus is the surgery he needs to address the constant stiffness in his legs, which prevents him from being mobile. Jaymin lies on the floor to play or sits in his chair. He can turn side to side, but he isn’t able to roll all the way over. His mom said he’s getting stronger in his trunk, helping him be able to gradually sit up after lying down. But he needs more balance to correct himself if he tips sideways.
Another goal for this surgery is to avoid his hips becoming dislocated, which would cause much pain and require a major surgery with extended recovery.
The surgery – called Selective Percutaneous Myofascial Lengthening – is scheduled for Feb. 6 near Galveston, Texas. This will lessen the spasticity in Jaymin’s hips. The same procedure may be done in his ankles or knees too, depending on the doctor’s examination. Only done by two doctors in the United States, the surgery is a minimally invasive, out-patient procedure with a short recovery period.
Medicaid won’t pay for surgery because it will be done out of state. Even with the half-off, private-pay discount, the surgery for Jaymin’s hips alone is estimated at 10,900. Should they do more to his knees or ankles, surgery costs could be as much as $14,000 plus travel costs.
Yet it could change Jaymin’s life.
There is an older method of the SPML surgery that is more invasive, takes longer to recover from, and leaves much scar tissue. “I have been researching this for a long time, and firmly believe this is a much better option for Jaymin than traditional surgeries, which often involve cutting muscles, tendons, and/or bones, and have poor functional results,” Micheala Toews said. “There won’t be any scar tissue to deal with later.”
In addition to the lengthening procedure, Jaymin will receive an injection near the nerve that’s making his legs so stiff. Basically, Micheala hopes this will decrease the constant signal from his brain, giving Jaymin about three years to learn new habits that will help him move better.
This surgery is just addressing one area of difficulty in Jaymin’s life. When he was six months old, he had to have a shunt put in after getting really sick and having his head circumference grow 2 inches bigger. He also had a tongue tie clipped.
While his eyes are normal, he has cortical visual impairment because the vision center of his brain was severely damaged. Initially, doctors weren’t sure Jaymin would eat without feeding tubes. He likes his food mushy, but he eats real food. He doesn’t speak, but he does have some sounds that communicate specific meaning – like Mom and music.
“He definitely knows what’s going on,” Micheala said of her son. “I wouldn’t put him at his actual age, but maybe closer to 2. We’ve come a long way from when he was a 1-year-old boy who didn’t react to anything visually. Now he’s pulling things off Walmart shelves. I’m good with that.”
Micheala Toews has been a foster parent for 12 years and had 29 kids in her home throughout the years. In addition to Jaymin, she has 6-year-old twins – one boy and one girl – she also adopted.
“When I was 18, I went to volunteer at a children’s home on an Indian reservation and it got stuck in my blood,” she said about opening her home to children who need a family.
For this family, medical concerns have become part of its everyday life. In fact, the mother had to quit her job as a home health nurse to care for her kids. She sews cloth diapers and is a foster parent support team member.
Jaymin requires therapy to get his body to move better and his brain to function better. For more than two years now, the Anat Baniel Method has proven most effective for Jaymin. This method is a science-based approach that focuses on the child’s brain and its ability to change and learn. It uses slow and gentle movements that get the brain’s attention, so it can learn to create new neural patterns that bypass damaged areas.
Micheala Toews is going through training so she can administer the ABM therapy to her son and eliminate travel to Louisville and Asheville, N.C. Right now they go about once a month to one of those locations and stay several days so Jaymin can have two lessons a day for three to five days at a time.
Anyone interested in donating money to help Jaymin’s surgery and future medical needs may do so at Jaymin’s YouCaring page. Updates on his progress are also posted there as well as on Facebook on the “Jaymin’s Journey” page.
And, hey, #ThreeWordWednesday friends, did you see that my ebook is just 99 cents right now – and throughout January? Here’s the post on why I’m celebrating during this cold, dreary month.
Want more stories? “Peace in the Process: How Adoption Built My Faith & My Family” is available on Amazon. Like me on Facebook, follow me on Twitter, peek into my life on Instagram, follow 152 Insights at Bloglovin’, or subscribe to receive “Insights in Your Inbox.”