A New Year... and a new start to our adventure

January 19, 2012

So tons of you have been asking for updates on our Kai boy...and our answers keep being "we don't know".  So today, I spent a long visit with our team of geneticist specialists at Duke with Kai...these are the ones who have been ordering all his MRI testing, as well as his muscle biopsy.  After a long conversation (some of which was WAY over my head), they explained to me that Kai's muscle biopsy came back "looking abnormal", but the abnormal findings are "differences" that they haven't been able to trace to any specific diagnosis yet, so leads us back to "what do we look for?!"  I would normally say it leads back to square one, but the biopsy WAS able to rule out some major diseases that they were initially concerned that Kai might have, so that was a big blessing!  So now we start fresh for the new year...and today we came up with a new plan...investigating the extremely rare diseases and disorders that Kai shows any sign or symptom of.   They have labeled him as having a "cerebellar ataxia with a rare metabolic and mitochondrial disorder"...but basically that means that he's got a mix of a bunch of rare diseases that they still aren't able to pinpoint what's causing each of them or how to treat any of them yet.  So back to the drawing board we went...
Our team of doctors at Duke have been wonderful!  Today, our GOOD insurance expired for Kai.  We had been blessed to be able to qualify for Medicaid for our kids for the past year, so a lot of the CRAZY medical bills that we would have had were covered.  Well, due to our fabulous economy (insert sarcasm) and some of the insane budget cuts, medicaid dropped our kids from their coverage.  So we have signed up our kids for Kevin's work policy, but it's not nearly as good, so after explaining all this to our Duke specialists at the beginning of this year, they scheduled our appt for today to order as many tests as possible today before the policy ran out!!  They are amazing!!!  So today...they did TONS more labwork...and we wait yet again for results.  Some will take just 3-4 weeks, and others they ordered will take 4-6 MONTHS.  I guess God feels we still have some patience to learn :)
But here's the cool part too...I was sharing with one of the specialists how frustrated I've gotten trying to fight and appeal their decision to drop Kai from the "special needs exception to medicaid", as they say they will only reconsider if he loses his ability to walk and care for himself!?  That's our lovely medical system for you... Medicaid also has been denying coverage for the mitochondrial med that the doctors have been trying to put Kai on for the past 3 months now, saying he doesn't need it and it's just a "supplement" that the patient should have to pay for out of pocket ($350 per 2 weeks!).  I was venting to her about that, and how I'm also having to fight the school to try to get the IEP for Kai that they continue to say he doesn't need and now they say they are going to take 90 days to "reevaluate him" to see if they think he needs it?!  The doctor paused a minute, and then left, only to return with 2 phone numbers typed out on a paper for me.  It was numbers for a Duke Attorney that will take cases like ours, FOR FREE, and represent us to fight both the insurance companies (Medicaid AND private insurance to get coverage for his meds, ALL his therapies (which they told us he was limited to a MAX of just 20 for the entire year...he uses 3 per WEEK now!!), all his testing, and all his specialists!!), as well as to fight the school and demand an IEP!  How awesome is that!!!  We could NEVER in a million years afford an attorney for that, but she gave us one who is willing to help people in our situation...so let the games begin!!! :)  The second # she gave me was the number to a legal office here in Raleigh that specializes in fighting the Wake County school system in specialized cases like ours where the school continues to say "the child is performing academically well so doesn't need an IEP"...and get this, they will also help us FOR FREE!!!  PRAISE THE LORD!!!  So tomorrow I will begin the calls to get the legal teams helping us fight!
So thank you to each of you for your prayers...and please don't stop.  Kai is in good spirits and doing well, but it's becoming more and more obvious how it's wearing on him both physically and emotionally.  He's exhausted by the time he gets home from school each day because he's spent the entire day trying to "be normal" and hold his balance, so after school he's beat....often too tired to run around and play like a typical 7 yr old boy.  It breaks my heart to see him that way, and he struggles to understand "why" he feels that way...and I have no answers for him as I don't even know myself...and neither do his doctors!
We head back to Charlotte to see our specialist there on February 7, so please pray for wisdom for her as she continues the search for answers and order more tests.  As of tomorrow, we will be paying out of pocket for all of Kai's tests (new insurance kicks in and it's ALL on us based on our new policy :/ )  so it's extremely important that they order JUST the right tests that will point us to more clarity and hopefully and prayerfully some answers.  Please continue to pray for our strength and patience.  It's been a full year and a half of tests and no answers now, and it's beginning to wear on our family a lot...especially me as I'm exhausted and frustrated with a lack of answers, but yet I'm also encouraged as I look back and see how God has provided encouragement and answers...and now FREE attorneys! to help us through each step of this crazy journey.  Thank you to those of you friends AND family both near and far who have cried and laughed with me, prayed for us constantly, provided hours of free babysitting just so we could collect our heads and regroup ourselves, pushed me in crazy workouts to burn stress :), just listened to me vent, brought us meals or sent us coffee treat gift cards (yumm!), and just sat with us over a glass of wine or case of beer to laugh and talk and take our minds off reality for a few hours.  You have no idea how much you mean to us!  We will keep you posted as we hear answers...and in the meantime, we will begin our process of getting some legal help to fight these crazy battles... :)
So the adventure continues......