the call...

So today came and went.  And I did get a call.  Just not the call I wanted.  I got a call from our geneticist at Duke saying they had just heard back from Baylor (the lab that has Kai’s tests), and there had been a “hiccup” in the testing and they were going to run a specific part of the test a second time.  They couldn’t tell her whether it was a major hiccup or minor, or even what it referred to.  They couldn’t even tell her if there was other things that they had already found.  They just said they had to re-run this part for legal reasons, and then have the lab work signed off on by the head researcher before they released all the results to her.  They promised before Christmas.  But we all know promises are like smoke from the medical world.  They mean nothing.  The date comes and goes and nothing.  Our lead geneticist feels we will definitely have an answer by the New Year.  But once again, I feel like hope got smashed.  I feel like if I get excited for the New Year, I’ll only be crushed again.  Today she set an official appointment for me to come in and go thru all the results with our entire genetics team at Duke.  It’s for the first wk of January, so I don’t know how to read that.  She’s going on vacation for the Christmas holiday for a week now, but she assured me that if she got results before she was back, that she would call me even if she was on vacation.  She’s that amazing.  But I just don’t know how to hope anymore. 

On a better note, the specialist, Dr. Porter, that is working with Kalia 2x a week and has also worked quite a bit with Kai in the past few months, saw both Kalia and Kai yesterday evening.  After working with Kai for quite a while now, she recommended that I take him to see a Neurologist who specializes in Kinesiology as well as Child Brain Development.  She warned me, it’s at least an 8 month wait.  He’s very well known around the world for his incredible research and discoveries, but he’s well worth the wait.  She had told me about him 6 months ago, and I blew her off, thinking we would surely have answers from our genetics team by now.  But this time when she said it again, I’d hit the point of desperation and figured “what can it hurt to at least call and get on the wait list”!?  So as I left her office yesterday, I called and talked with the doctor.  Sure enough.  6-8 month wait.  I just put my name on the list and hung up.  This morning, as I was coaching a client, my phone rings and it’s the doctor.  As I listen, my hands tremble as he says he’s literally JUST had a cancellation and would like to slide Kai in to the opening… TODAY!  So I dropped everything… yes EVERYTHING, and booked it to Chapel Hill.  His office is about 45 min from our house… and I needed to be there 45 min from when he called, and I still had to throw on my clothes (I was coaching at the pool!), get to my house to pick up Kai’s medical records, race to Kai’s school to pick him up, and then get to Chapel Hill… all in a TOTAL of 45 minutes!  I’m thankful the cops weren’t out much on the route I took…that or their eyes were blinded as I passed… but I made it!  The doctor spent over 3 full hours with Kai.  No, he didn’t find answers, but he did find some things that he strongly feels can help us at least deal with his symptoms and struggles.  He strongly feels Kai’s struggles are coming from a neurological issue, but are combined with some other muscle issues, and most likely some form of muscular dystrophy.  He also felt that Kai has an autoimmune disease, most likely one he got from me as I have Systemic Lupus.  The autoimmune part is just compounding the other struggles he already has muscularly and neurologically, and making his struggles more of a challenge.  So he “jumpstarted” his Thalamus and Spleen (2 major factors in proper immune function) and started him immediately on some homeopathic substances to help them function better and help slow down the “miss-fire” between his brain and muscles.  We will see.  I just am trying really hard tonight to focus on the fact that God must have had a plan for me to blow off the recommendation to see this guy 6 months ago, and suddenly , less than 24 hrs after my initial call to add Kai to the waitlist for 8 months, God opened the doors to an appointment today with a specialist well known around the world for his research and discoveries.  There has to be a reason.  Right now, the trees are so thick I can’t see the forest, but I know it’s there.  And when I get to the clearing, I’m sure the trees will look more beautiful, right?!