spinning and trying not to be dizzy

February 14, 2013

So I'm going to warn you now, this will probably be a journal entry of confusion, but I'll keep it short... promise :)  This week has been a whirlwind.  Crazy.  Out of control.  One where you spin and just close your eyes and hope the spinning stops soon.  It started with a WILD weekend of class for me, which I loved by the way.  It was my passion...an extension of my triathlon coaching license, while I got my certificate to personal train.  But it was a LONG class, so yes, I started the week tired for sure!
Monday, started off rough.  I got an e-mail from Duke with a bill from our very first visit of 2013 with our lead specialist there.  $6500.  Yes, you read that right.  $6500.  I nearly puked.  For those of you who have been friends with me for a while on Facebook, you know how much I despise insurance and feel like it's a waste of my money.  This just confirmed it to me.  Since we haven't met our deductible for 2013, a visit to the doctor costs a semester of college instead.  So as I drove, frazzled, to Duke, I got another message from a friend of mine.  She wanted to know if I was going to the Y (my workplace) that day.  My day was already in a tailspin (I had ran out the door flustered by my e-mail from Duke and had forgotten to brush my teeth so had to stop to brush at my son's preschool... thank God I keep a spare in my car!!), so I quickly responded to her saying that if I got lucky, I would make it there but for now, I was headed to Duke which would most likely take a good portion of our day.  I took Kai to a Neuro-ocular specialist at Duke... that's just a fancy way of saying an eye dr who specializes in the neurology part of the struggle.  After a few hours with the doctor, we left with her saying that Kai had NO, zero, zilch, none, big fat ZERO, signs or symptoms of the oculomotor piece of his diagnosis.  So yes, this only added a question mark to his diagnosis.  Is it really the right diagnosis?  So yes, I contacted our doctor at UCLA again, and he reassured me that 50% of the patients with AOA2 do not have the oculomotor piece of the disease so I shouldn't worry (don't worry, it made me REALLY wonder why they even call it Ataxia with Oculomotor Apraxia Type 2 if 50% of the patients don't have the "O" to the AOA?!).  The doctor had dilated Kai's eyes, so he couldn't go back to school because he couldn't see anything, so together he and I headed to pick up Thayne at preschool.  As we got closer, we realized that we still had 1/2 hr before we could pick him up, so Kai and I made a pitstop at the Y so I could sweat a little of my stress off.  Hindsight... God knew I needed that stop.  I bumped into my sweet friend as I was racing out the door to grab Thayne.  She handed me an envelope and told me to open it later.  I was frazzled, so shoved it in my gym bag and ran out the door, saying a quick thanks and not much more.  After a half a dozen errands and finally a shower, I remember the envelope and opened it at home.
Speechless and shock don't even begin to describe how I felt as I opened the envelope... and over $600 in cash fell out into my lap.  Yes, over $600!  My friend's small group from our amazing church had collected money to help cover Kai's medical expenses... little did they know what that morning had brought, or how speechless I had been that morning, when I really just wanted to SCREAM at God.  WHY?  WHY?  Why me God??  I was mad.  But still, God could handle it.  And He was just letting me know He still had my back.
Fast forward thru a crazy Tuesday and Wednesday (so crazy I don't remember most... just a nutritionist appointment for Kai, multiple other appts for the other kids, a follow up appt for my broken hand, etc), and get to today.  You know it's been a long day when you forget that your little 8 yr old has therapy when he has had therapy every Thurs for the past 3 years!  I know I've raved about his therapists before, but here I go again... they are AMAZING.  We are blessed with THE most incredible team of PT, OT and ST experts possible.  But here's the problem... the therapists know what they're doing.  Apparently the Duke specialist didn't.  For 3 weeks straight, they've been doing some eval testing, and every week, he's showed signs of the oculomotor apraxia.  Not tracking correctly, extreme fatigue after just a few minutes of tracking, etc... yes, total opposite of what the Duke dr said on Monday.  This week was no different.  And this week, they showed me how he is most definitely not tracking with his vision correctly.  I'm no eye specialist, but I know wrong when I see it.  His is wrong.  I'm the one who first noticed my boy needed glasses at age 2, and I definitely know his tracking was wrong.
So where do we go from here?  I don't know.  I'm spinning.  I'm frustrated.  This means we'll have to begin a fight with insurance to get a second opinion.  This also means a trip to UCLA is more important than ever.  And the honest truth of it... I'm angry.  I don't get it.  Why can't a doctor just do their job?  Why does my son have to struggle to just get by every day?  Why can't I just get a diagnosis and really process rather than still constantly having so many questions and "red flags" in his "possible" diagnosis?  Why did God allow this to happen to my little Kai?  Why?  Why?  Why?
So yes, this isn't a message of hope or peace today.  For that, I'm sorry.  But I just want to have a day where I can stop being dizzy for once.  A day with a definite.  A day where I can watch my little boy run and play like his friends and not come inside and flop on the floor in tears of pure fatigue.  A day where he can read like he loves to without his eyes being so fatigued he can't see straight.  A day where he can just be kid without the extra fight just to stay standing.