I didn't blog about it because, quite frankly, I was devastated. I felt like a failure. Valid or not, that is how I felt. My job as Bryce's mom is to care for him and give him every possible opportunity to reach his full potential that I possibly can. And in my mind's eye, that means I should be doing everything there is to be done. I considered regular therapy to be a vital part of that plan.
First I panicked, then I resigned myself to it and decided to enjoy the holidays and our time together before really getting down to brass tacks and figuring out our next step. Well, as the holidays came to a close I noticed that my feelings had begun to shift slightly. We had never had a real break from therapy and it was good to see that Bryce could continue to make some progress even without it. His speech is still a huge worry for us, especially since he's made little to no progress on that front in I don't even want to think about how long. But Bryce has begun balancing to stand for up to 20 seconds at a time. And our little turkey could definitely stand longer if he wasn't so determined to take a step, too!
Despite coming to terms, I've been racking my brain every second of every day trying to figure out our best next move. I'd considered leaving a job I love to find one with insurance but realized I'd have to work outside our home full time and then when and how would Bryce get to his 5 or more hourly therapy sessions per week?
We looked into changing insurance, thinking we could pay more if it gave us the coverage we needed, but low and behold - private insurance policies all have these ridiculously low therapy coverage limits. Even Caleb's policy through his employer would cost more per month than we could afford with a $3,000 deductible before covering just 25 visits per year. Bryce would use all of his visits in the first two months of the year.
Maybe I should stop working and we could qualify for CHIP or Medicaid but then how would we pay for our home and expenses?
The list of possibilities seemed endless but unfortunately so did the reasons why none of them would work for our Bryce.
Beyond frustrated I returned to the clinicaltrials.gov website where I periodically search for clinical studies that Bryce might qualify for and benefit from. And this time, for the first time, there were several I thought could be mutually beneficial for us and the studies.
I began contacting some and asking questions, filling out applications and medical histories, researching the studies and their leading doctors. And it was during the research of a constraint induced therapy study being held at the Columbia Teacher's College in New York that I accidentally found Ability Camp through a paid Google Ad.
I clicked that ad with full knowledge that it was an advertisement and was floored when the very first page showed video of children very much like Bryce making incredible strides in just 5 weeks at this intensive camp.
I had to know more.
So I read up on their method of teaching for children with Cerebral Palsy, traumatic brain injuries and other such brain related motor issues: conductive education.
First founded in Budapest, Hungary in the 1940's, conductive education was hidden behind the iron curtain for decades but has since become the standard of care for these children across Europe. Several years ago 60 Minutes did a segment on the methodology, which you can watch here:
Since that 60 Minutes segment Conductive Education has been spreading across the U.S. There aren't currently any facilities in Texas but 20 states now have CE centers. After thorough research we decided that this has to be our next step for Bryce. We simply can't pass up an opportunity to help him be more independent, to build his self confidence and maybe, just maybe, to walk.
I looked into the various programs being offered and have excitedly decided on the Conductive Learning Center in Grand Rapids, Michigan. Here is a video they did for their annual fundraiser a couple of years back:
We're hoping and praying that Bryce will be accepted to attend their summer camp this year. The summer camp is a 5 week intensive conductive education program where the children attend small group classes for 5 hours, 5 days per week. I can't begin to tell you how excited we are at the potential progress we hope for in that 5 weeks!
Of course, as you can imagine, this is no small endeavor for our little family. Things are tight, we have a 6 month old baby, Grand Rapids is on the other side of the country and a significant investment is necessary to make this a reality. It's a lofty goal but one we feel we have no choice but to go for.
And things are moving fast! The application deadline for the summer camp is February 1 but the center sells out of spots every year, maintaining a wait list each summer. So I sent in our application yesterday and will be sending in an assessment video by week's end. By God's grace, Bryce will be accepted into the program and there will be a spot still open for him. And then we'll be working our butts off to raise the funds to help cover the cost of driving to the center, staying at the Ronald McDonald house for 5 weeks and paying Bryce's tuition.
I hope you will all come on this adventure with us, as you have walked along the challenging, heart breaking, joyous journey of Bryce's life thus far. I'll be back in a couple of days with a video assesment of Bryce so we can all see where he is today and hopefully can look back this summer and see how far he has come.