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?! 

 

without blinders...

So a few weeks ago, I decided to start a blog.  Mainly because finding the Facebook “notes” page became way too complicated when they changed everyone over to “timeline”, but also because I felt like it would be good for me to make a place to share our story, and if someway, somehow, our story of our journey with Kai could help someone else, then it would all be worth it.  So I began my hunt for the perfect name for my blog.  After a LONG hunt for names, many of which the domain had already been taken, I was challenged by an amazing friend to find something that was outside the box yet still defined me.  “Living without blinders” just felt right.  I try to live life raw and real.  I lived for a long time behind a mask, which was exhausting.  But life has dealt me a lot of blows that has forced me to live raw and without blinders.  Just real.  So it’s all out there.  I’m a “what you see is what you get” sort of girl.  No more masks.  Just “life without blinders”.   So I’m working on setting that up… but in the meantime, as I brainstorm that perfect name… I’ll attempt to post another “note”.

So… here’s the latest.  Mind you, I typed out a VERY long update a few nights ago, which for some reason blogspot.com decided to delete, so I’m starting over.  The second time is always better because the glitches are all out right?!  J  So this past summer, the doctor’s did the Exome Sequencing test on Kai.  The nutshell version is that it’s a VERY rare test that costs LOTS and may or may not give us answers (see previous update!).  We were warned it could take 6-9 months to get back.  Over the course of that time, we’ve been sent to many other specialists, all without answers but continuing to fight to find a cause to Kai’s struggles that are progressively getting worse.  From day one of our journey 3 years ago, Kai was sent to see our AMAZING Physical Therapist, Betsy.  She’s been an answer to prayers that we hadn’t even thought to pray yet.  She has been a passionate advocate for Kai, continuing to stay on top of all the latest research and continuing to love on Kai like he’s one of her own.  She has been amazing…someone rare that you usually only pray that you will find in the healthcare system now, but she’s real and full of a heart for Kai and for his best interests and for our family.  We’ve been through quite a few Occupational Therapists since the start, but after quite a few changes, we’ve landed with Kim.  Kim is passionate about what she does and amazing at it too.  Despite having a more than full schedule of patients weekly, Kim was willing to take on the challenge of our sweet mystery diagnosis Kai, and we’ve never been sorry about the changes that led us to her.  She’s been incredible!  And then we have Jessica.  She’s been our incredible Speech Therapist from the start.  Due to scheduling conflicts originally, we changed around to multiple other therapists… but thanks to circumstances beyond our control, but definitely in God’s hands, Jessica was brought back to us at the therapy location closest to us where Kai was getting his PT and OT, and we’ve been beyond thankful!  She’s full of life and energy and a passion for our son’s wellness, but also for making his “therapy” fun while working on his progressively deteriorating condition.  And with THIS incredible team… Betsy, Kim and Jessica… Kai LOVES his therapy.  It’s a good thing too, because he spends 3 hrs every week with these girls.  But they’re a God send. 

I introduce you to them because they play an important role not only in the constant help to strengthen Kai’s weak and unstable muscles, but also teaching him to modify, adapt, accept his condition, and keeping his life, the life of an active and intelligent boy, as functional as possible, full of joy, fun, laughter, confidence, and most of all, hope.  So as I mentioned, Betsy, our PT, stays on top of all the latest research.  So back in October, she introduced me to this new TheraTog outfit that she had been researching.  It’s designed to help assist kids who struggle with muscle control and weaknesses.  They’re used for posture and torso alignment control.  So they don’t fix problems, but they definitely help with the symptoms.  So she got him one to try.  It was the best birthday present I could have ever received.  We have been working with Kai for 3 full years to try to get him to balance standing still with his 2 feet together for just 10 seconds.  See, that’s something you and I take for granted.  Go ahead.  Try it.  Easy for us.  But for Kai, 3 seconds was his max.  Then, he’d wobble and fall.  No matter how hard he tried, he couldn’t do it.  And trust me, he tried.  So 10 seconds seemed impossible.  THREE full years we practiced and worked at it.  But nothing.  Then enter Betsy’s research and the new TheraTog.  I only remember it was October because it was my birthday, and I was frustrated at spending yet another birthday with 3 hrs of therapy.  Normally, I sit in the waiting room with the other 3 kids, or run to the grocery for a bit with the other kids, but tonight, Betsy asked me to come back to his therapy session to see this new “suit” she wanted to try on him.  I can’t begin to tell you the next few moments in words.  It’s probably better described in tears.  She but Kai’s “suit” on him, and he stood.  Still.  Not just for 3 seconds, or even 10 seconds, but for 20 seconds.  My eyes were too blurry with tears to keep counting and watching.  All I knew is that I wish I had a camera of his face.  It was priceless.  His eyes, full of renewed hope.  His smile was as big as his face as he watched himself in the mirror actually standing still.  Something he worked SO hard on for 3 full YEARS… and suddenly it was possible.  He did it!  So that day, we began our fight with insurance to get him his own “magic suit” (as he named it that day!) as soon as possible.  Once again, Betsy was on our side, fighting with us.  Three of his other specialists who hadn’t even seen the suit or seen it on Kai wrote letters recommending the necessity of the “magic suit”.  We went ahead and ordered the suit…and just figured like everything else, we could continue the fight after it arrived.  So the week before Thanksgiving, Kai got his very own suit!  We’re still fighting insurance, but in the meantime, Kai is loving his suit, and that’s worth every minute of the fight!  It in no way fixes the problem, but it allows Kai to feel a sense of security that he can’t feel without it, so it’s worth it to see the confidence it gives him.  I’ve said it before and I say it over and over again… it takes doctors who are on your side and don’t just look at you as a number to get things done and to make forward progress and keep hope alive.  And for me, Betsy was a sparkle of hope that I needed on my birthday J

So we fast forward a bit again… it’s now December.  Our weeks in between consisted as usual of a minimum of 3 therapies, and then anywhere from 1-6 other doctors appointments for Kai.  Then, throw in there what was supposed to be a “well check” for our 10 yr old daughter Kalia, and turned into quite a nightmare when the pediatrician tells me that she spots a pretty serious case of scoliosis in Kalia’s back that needs immediate attention.  So just in case I was bored, I got to add in more specialists for Kalia to begin to monitor her back.  Initially, they said it looked so severe that it would require surgery right away.  Yep, just in case I had nothing else to do with my other 3 kids, one being special needs, all I needed was a child with back surgery.  So I begged God through many tears to please not let it be true.  With the recommendation from our pediatrician, I took her to one of my doctors who is a chiropractor, but also a holistic specialist.  And yet again, God showed up with more of His little blessings.  After x-rays and a thorough exam, she realized that Kalia has an extra lumbar vertebrae that just makes her extra special J  So instead of 5 lumbar like you and I have, she has 6, so her spine has to curve just a bit to make room when she bends (and it also means there’s a very strong possibility she will be tall… taller than me!).  So there’s a high probability it will cause her some pain down the road if and when she has kids, but for now, they will just treat the symptoms.  Somehow, it had also caused one of her lumbar vertebrae to rotate 90 degrees the wrong way, so they are working with her twice a week now to try to manipulate it back into it’s normal positioning before she hits her growth spurt… but I’d 100x rather this than surgery!  So just add those 2 appointments to my calendar every week please J    

So this brings us up to the current.  Last week, the specialists at Duke messaged me saying that they are expecting results THIS week on Kai’s Exome Sequencing that we had done this summer.  So… for me, mom, something that I had been able to push to the back of my mind for so many months got forced back to the front and center.  So now we wait.  I sit on pins and needles waiting for the call where they will hopefully tell me some answers.  Today, I got a call… and our lead Duke geneticist said she’s still waiting for the results.  So again… we hurry up and wait.  She’s called the lab again today and is hoping for a response tomorrow.  We’ll see. 

Your prayers have been critical.  The prayers, calls, texts, hugs, and tears you have shed with me as I wrestle through this have been more help than you know.  I’ve been following the journal of a family who lost their sweet baby boy just an hour after his birth.  It’s amazing how God uses a journey of pain to speak to you in ways you never dreamed possible.  And as I read their story, their pain, their joy, their anguish, I found tears freely falling down my face.  For those who know me very well, you know I don’t cry.  I fight.  I fight because I have to fight and keep moving or I get stuck.  I have to fight, and for me, not feeling makes it easier to just fight and fight some more.  But this week, I felt.  It was something rare, but something I needed.  I needed to feel.  I needed to just cry the tears of “what if”.  The tears of anger.  The tears of frustration.  The tears of exhaustion.  The tears of “why”.  The tears of a mama hurting for her son.  The tears of a mama who wishes with everything in her that she could take the pain and frustration and embarrassment and hurt from her sweet little boy who fights harder than anyone else I’ve ever known. 

But then I get back up, brush off those tears, and fight again.  And wait.  I hold on desperately, by a thread, but desperately to Jesus.  Because that call WILL come.  I pray it’s tomorrow, but it may not be.  So I have to wait.  Just hurry up and wait some more.  And in the meantime, I appreciate your prayers.  Your love without expectations.  It’s a long road ahead… but we’ll take it one day at a time… and wait.

Weathering the Storm

September 18, 2012

Today, I feel like this is an appropriate title for the journey I'm walking.  Today started off raining... only to turn into monsoon rains as I drove Kai (and Thayne as our guest tag along!) to Charlotte in the still dark hours of the morning.  As the rains picked up and my car speed slowed even more, I continued to sing along to my music as I remained hopeful about today's dr appt.  It seemed like it was just going to be a good one, since I'd been waiting on an appt with the neuro-muscular geneticist since Dec.2011, and they had FINALLY had an opening come available for Kai to get in.  It's a HIGHLY specialized field, with only 3 doctors in all of NC specializing in this, so getting in to any of them was supposed to be a year, if not more, wait.  I had got a call 2 wks ago saying they had an opening for today, so I jumped at the chance and made it happen.  Well... I should have learned by now not to get so hopeful, because if I don't go in too hopeful, then I won't be so frustrated and disappointed when it's all over.  But apparently I have yet to learn my lesson.  So I was hopeful.  We arrived right on time, and we were quickly taken back to our room to meet with a genetics counselor.  She was very sweet and talked highly of the "new dr" that we were about to meet.  I didn't think much of her comment about the "new dr" because I just figured she meant "new" to us, so we continued on for an hr, going over, for the 10000000x, Kai's history, our family history, tests that have already been done and their results, symptoms, etc.  Then, the dr comes in.  She begins by introducing herself, and then asking me why we were refferred to her.  Still being hopeful, I told her our muscular geneticist had referred us, thinking Kai would greatly benefit from meeting with a Neuro-muscular genetics specialist and getting the expertise of their wealth of knowledge in this field.  Then I got stabbed.  She states that she's just a geneticist.  Apparently the scheduling dept made an error when they called and bumped up our appt, and instead of keeping us w/ the same neuro-muscular genetics specialist we were scheduled to meet with in Dec.2012 (ONE full year after the appt was originally made!), they had switched us to her... which is the exact same specialty as our team of already awesome drs here at Duke.  Then, she proceeds to tell me that she doesn't agree with the findings of the tests that Duke has done, and she would like to see them re-done from a different highly specialized test series that is done by only 1 lab in the entire world.  She wants us to re-do the tests in the Ataxia Panel... and for those of you who have followed Kai's story... that's the test that the lab re-drew blood for 2x and then "threw out" without notifying us after 6 months because they didn't have enough DNA and didn't want to combine any more samples for the same test.  She continued to say that "there's no real rush for the testing, because no matter what, it's something that can't be cured and so we're just going to have to deal with it, so knowing what it is will help us deal with it and may be able to get us closer to a medication that could possibly help, but there will be no cure so there's not an urgency on test results."  Talk about a dr with no bed-side manor, and who obviously doesn't have kids of her own because I'm pretty sure if she did, she'd have an ounce of compassion in the choice of her wording.  But there was none of that for sure.  She then continued to say that she still feels that Ataxia Telangiectasia and Friedreich's Ataxia are still very strong possibilities (if you read any of the old notes... you will remember we celebrated these being ruled out!  Yep, she doesn't agree and feels that the tests weren't totally accurate).  I'm not really sure what all she said after that, because I was too much in shock trying to process all the stabs and kicks she had just laid on me.  I do remember asking her "then what next?"  Her answer... wait.  Wait for the tests of the exome sequencing that are still pending, then draw for the Ataxia panel again, and wait some more (another 6-8 months for results from that).  She said if I really wanted to do something else, take Kai to a childrens specialty center that was highly specialized in the neuro-muscular genetics field... which there is only 4 in the world.  
Yep... so that's how the appt went.  Only to return another 4 hr drive in monsoon rains and tornado sirens blaring to get home to wait...  
Right now, I'm not quite sure what I'm waiting for.  Answers would be awesome, but I can't hold my breath for those because after 3 yrs of waiting, I've learned now that I can't do that.  Life is today.  One hour at a time.  So I guess I will wait... I have no other choice.  But I am determined to just take today for what it is... I will appreciate the things my Kai CAN do... his laugh, his cute grown up front teeth that make his smile so contagious, his determination, his will to fight, his incredible patience going from test to test and dr to dr, his love for his siblings (sometimes), his 110% boy spirit of adventure and attitude.  I'll take today and appreciate that, and try not to look to tomorrow.  
Thank you for your prayers.  Thanks for the encouragement, support, texts and e-mails, your meals... I'm incredibly blessed to have the family (immediate and extended!!) and friends I have who are willing to love me in this storm.  I feel like the clouds are hovering... sort of like they did today.  But as I drove home tonight after a few hours of TaeKwonDo with my kiddos, I looked up to see a beautiful clearing way off in the distance that still had the reflection of the sunset in it.  I'm going to hang on to that ... knowing a storm can't last forever.

Learning to hurry up and wait

August 16, 2012

So I'm thinking as I begin to write this that I should really take some lessons and learn to do a blog :)  But since I don't know how to do that, I'll continue to update everyone on here until I have some free time to figure out blogging!
So today, we spent another day at Duke.  Kai's team of genetics specialists called us 2 weeks ago after conversing with specialists around the country at Baylor, Charlotte Childrens Center, Duke, UNC, and a few other research labs I don't remember the name of...they decided that pretty much our only option for having any hope of having answers for what's affecting Kai so much is to put him through a test called a Human Exome Sequencing.  The way they explain this test, is like it's looking at a library of books, but only seeing the words with no capitals, punctuation, etc.  It will look at the genetics of both Kevin and my genetic makeup and compares it with Kai's to see if there's any genetic abnormalities anywhere in any of us that could possibly be causing his symptoms.  This test looks at Kai's dna and if any abnormalities in the genes of his, they will compare it with ours.  The other tests we have had done have had about a 20% chance of showing an answer.  So far, NONE of them have showed anything at all.  Zero.  Nada.  This test has about a 50% chance of showing us some answers, so we are cautiously hopeful.  God is teaching us patience yet again...as they said that the soonest we will have these test results is 3.5 months from now, but could be as long as 6-8 months of a wait. IF this test still shows nothing, then they will put Kai as the #1 candidate on their research trial that they are expecting to start as soon as they get approved for the funding, which is expected to be at the end of this year.  The research grant, which our genetic specialist at Duke is heading up the project for (definitely a God thing!), is funding to cover 33 patients over the next 4 years to do a test called Human Genome Sequencing.  This test would cost $3 MILLION per patient (yes, THREE MILLION DOLLARS PER PATIENT!), so having Kai as a research patient for this is an incredible opportunity because the test is not offered to general patients due to the incredible cost to have it done.  The Genome Sequencing looks at all those little punctuation and capitals and spacing that the Exome Sequencing couldn't look at, so MUCH more detailed.  It looks at Kai's dna and compares it with every single known human disease or disorder.  Each patient who has this test done gets over 3 TERABYTES (over 3000 GB of data!!!) of information on their condition!!  We're going to need a library for Kai's medical records :)
So that's the testing info...and if you're confused, don't worry, so am I :)
But here's the rest of the story... today's test is estimated to cost around $40,000, which our insurance says they can't tell us whether or not they will cover until it's filed?!  Seems like a ridiculous answer from them to me, as I've never bought anything else before and been told they don't know how much it costs until after I pay for it!?  But I guess insurance goes by their own rules.  We're praying for a miracle that they cover it without a fight, as I'm frankly worn out from fighting insurance with appeal after appeal.
The other thing is that they told us today that whatever Kai has, there is no cure, and most likely no treatment.  They said he'll just need to continue his therapy weekly (he currently goes to Occupational therapy, Physical therapy, and Speech therapy every week) to try to help him continue to learn to adapt and function.  His condition is definitely progressive, and has been getting more noticable and more challenging for him to function as the weeks go on, and they said that will most likely continue.  You're probably asking why do we bother with such huge tests then.  So here's a feeble explaination from a mama's heart... Brayden Kai is my son.  I want to do anything and everything in my power to help him in any way I can.  But if I don't know what's wrong, I can't help.  Even if it's just to help by educating him and adapting to make things more accessable for him.  They say knowledge is power.  I agree.  When you don't know, you are stuck.  You can't walk forward because you're stuck.  Just knowing, no matter what it is, you can begin to cope and process through what lies ahead.  But not knowing, you just continue to wonder and feel like you're stuck in a tornado.  So my mama heart needs to know.  It's broken in the tornado right now.  So today, although I think in my head I knew that there wasn't a cure for my sweet boy, hearing a doctor say it aloud for the first time really hit me like a ton of bricks.  It's my boy.  My son.  My fighter.  And I wish that I could take his struggles on me and struggle instead of him.  I'd give anything to do that.  But for some reason, God chose Kai to fight through this challenge.  I've been struggling a lot with my faith the past few months.  Trying to hold on to God being a good God who loves deeply and never lets us out of His grip.  My boy has showed me a lot, taught me a lot, and challenged me a lot.  But today, I realized in a new way that God IS a good God.  And He does care.  And if I take the time to notice, I can see His fingerprints throughout each day despite the struggles.  Little things...like the rain, friends who give amazing hugs when needed, friends who are willing to watch my kids at the drop of a hat, laughter of my kids, songs that come on the radio that make me smile with fun memories, tears, breezes on a hot day.  The fingerprint list goes on.  So today, as I got back in the car with my emotions overwhelming me after a long day with the specialists, I turned on the radio to hear this song... "Our God" by Chris Tomlin:  http://www.youtube.com/watch?v=XkljgA5SQc8   "my God is greater, my God is stronger....my God is HEALER, awesome in power..."   I'm slowly learning to pray with faith.  It's a struggle, but today, for the first time, I prayed for healing for my Kai.  That may sound crazy to be the first time I prayed this, but I fully admit my faith is weak.  But I'm praying it today, and will try to do the same with faith tomorrow, and the next day, and each day after that.  That healing may come here on earth... I mean, how AMAZING would that be if the doctors looked at Kai one day and suddenly he was healed after we were just told there was no cure?!!!  I mean, talk about God showing up and changing lives right there in front of us!!!  But I also know that healing may not be until Kai's life here on earth is over and he's with Jesus, and that's ok too.
So thus begins another wait... but as I wait, I'll continue to look for the fingerprints of God in each day.  I'm sure some days will be better than others, but help me see those when I'm looking down instead of up.  And please continue to pray with and for us.  There's a long road ahead...but we have to remember to take it just one step at a time, one day at a time, and hang on to our HOPE.  That's all we have... so we wait...

In a valley

June 14, 2012

So I've promised I would write updates periodically on the status of Kai, but honestly I haven't written in a while because there wasn't much to write about about...just dr after dr, test after test, answer after answer that came back "inconclusive".  I also don't like re-living all the frustrations I have every time they come back with "that test didn't show us anything, so we're going to send you to another new specialst and run another set of new tests".  But I guess that's reality right now so I'll fill you in.
Back in April, we were SUPPOSED to get answers from a test that they had done 7 months earlier called an "ataxia panel".  This was an EXTREMELY expensive test ($38000...yes that's 3 zeros!!) that was supposed to show what, if any, type of ataxia Kai might have.  They had warned us it would take 6 months to come back, and it got postponed a month because they said they "ran out of dna to complete the test" so they had to draw more blood (4 more viles to be exact...dr said it really meant that the lab probably dropped the tubes they had left from his original 8 vile draw!) and re-send it off to be completed.  Well, April was supposed to be the answers to those.  The last week of April, I got a call while I was away for a training in GA for church, and they told me that the lab had sent them a report saying they had "discarded the test because of not enough dna and they couldn't add another draw to the test because they didn't like to mix that many different draw samples in a test".  Yep, so they (the lab) threw out the blood.  And with it threw out the test, and gave us NO answers at all saying that they couldn't give even the results they HAD found because it wasn't a complete test.
So back to square one we went.  The doctors conferenced and researched and tried to come up with a new plan.  So last month we met again and they decided to hold off on trying for the Ataxia panel again, and this time they ran a Mitochondrial Panel.  Some of the Duke team (don't forget, we have DOZENS of doctors following Kai's case on a regular basis, so every one of them has their own opinions!!) feels that there is a possibility with Kai's Co-Q10 levels being SO low (near 0!) that he has a mitochondrial disease of some sort.  The good part is that this test only takes about 6 wks to come back (that's FAST for his tests...most take 3-6 months!).  The rest of the doctors don't feel it's mitochondrial related but that it's some other extremely rare combination of disorders.  So we will wait until this mitochondrial panel comes back, and if it shows no answers, we will proceed with a test called a Human Genome Screening.  You can google it if you're bored, but it's a brand new test (literally been available for only about 6 months, and is only done in 3 labs in the entire country...thus CRAZY expensive...like $30-40000!) that supposedly looks at a person's genetic dna, as well as their parent's dna, and then puts it into a computer that scans it for literally EVERY possible known genetic disorder known to man.  The thing is, if it's something the computer has never seen before, it won't show up an answer even if there may be other people out there with that disorder.  So it's a stab in the dark because it's so new, but Duke is expecting to be awarded a research grant at the end of this summer that will allow them to use 300 research participants to do this test on at NO charge, and our specialist at Duke happens to be the person totally in charge of this research study and has told us Kai is #1 on the list of participants so we would not have to pay a single penny for that test!!!  That's a miracle for sure since insurance already said they wouldn't pay for it!
So bringing you to this week...I took Kai to Charlotte to see our team of specialists there on Monday.  We drove down 3 hrs Mon morning, and spent another 3 hrs with the specialists there before driving back.  Our Charlotte dr isn't in agreement with Duke.  She doesn't think it's mitochondrial or ataxia.  She strongly feels it's an extremely rare form of Muscular Dystrophy.  Once again...problem being that it's SO rare that there isn't a test for it so they have to eliminate all other options before narrowing it down to a diagnosis...taking at least a year if not more.
So here we are.  No answers ... only from insurance that they don't want to cover his therapies or orthodics (both prescribed...therapies being 3x a wk!).  So I apologize for my negative attitude lately.  I know I let a lot of my frustrations vent on FB, mainly bc it's a "safe place" to vent and not be hurting anyone but just venting to air :)  It's a tough road to walk when you watch your sweet, intelligent, handsome 8 yr old boy struggle daily with the normal things that you and I take for granted...sitting, standing, walking, writing, talking.  The things we do without even thinking, and require every ounce of energy my little man has.  And he's a fighter so he won't give up and he won't quit and he is the king of modifying and adapting to make it work so he can be "normal".  But as a mom, it hurts.  It breaks my heart to see him struggle and not be able to help him and when he asks why, have no answers for him.  So your prayers are appreciated more than I could ever tell you.  There's a lot of you friends and family that have let me just vent and cry on your shoulder without saying a word and just hugging me and telling me you are there.  Thank you.  Please don't quit praying.  I don't know how to ask you to pray, because I don't know how to pray myself anymore.  I'm just thankful that when I don't have words, He still knows my needs and hears my cries.  You know how the Bible says He gathers our tears in a bottle...well, I'm pretty sure He had to trade out my bottle for a vat recently :)
I will try to keep you posted as we know more... but please know how much I appreciate each of your prayers, hugs, tears, laughs, and encouraging words.  I may not respond to each e-mail, but I DO read them and appreciate them more than you know!  Thank you!!

Glimmers of Hope

January 25, 2012

Hey all...it's just me again but wanted to write a quick update on Kai as we actually got some glimmers of hope this week!  I got a call early Monday morning from Kai's genetecist at Duke.  They had just got back another panel of labs from his muscle biopsy that we did back in early December.  Kai's Coenzyme Q-10 was EXTREMELY low.  I'll let you google what exactly CoQ-10 is, but in a nutshell, it's produced by our bodies and is essential for the basic functioning of cells.  It helps convert food to energy, and it's also a powerful antioxidant.  Kai's is nearly 1/2 what the minimum necessary amount is for a healthy child!  So...this gives us a glimmer of hope that we actually might be able to narrow down our extremely wide search for answers.  The doctor is starting him on a high dose of a replacement co-q10 liquid that will absorb quickly and hopefully help bring up his levels.  They are hoping this starts to help make a difference in his struggles as well....we shall see, but we are definitely praying on those lines.  We definitely need your continued prayers though, as now they have to begin to investigate the WHY behind the low levels.  There can be quite a number of causes...ranging from not-so-serious things, to extremely serious things like cancer and serious heart conditions.  Please continue to pray that they are able to find the cause of his low levels quickly without too many major tests....we are hopeful for answers!!!
Also, we have an appointment scheduled for next week Friday to meet with the attorneys at Duke to see if they will be willing to take our case and help fight the school system for an IEP (Individual Education Plan) for Kai, as well as help us fight insurance, who as of today is denying covering any of the CoQ-10 replacements as well as ALL of Kai's therapies (which he need THREE per week...Physical Therapy, Occupational Therapy, and Speech Therapy!).  We need earnest prayers and miracles quickly that Duke attorneys will take on our case and fight hard for us and get these things approved quickly, as we can't last long on the "pay out of pocket" plan :/  That meeting is next Friday so mark your calendars!! :)  We will keep you posted...but THANK YOU from the bottom of our hearts to all of you near and so far away that are praying us through this...and thank you for letting me be nasty and vent when my patience runs out with the stupidity of insurance (I'd still like a good solid answer of why I pay for insurance when they don't cover things we NEED so I still have to pay for my services too?!!!...ok, stepping back off my soap box!) :)

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......

God sized things...!

December 13, 2011

Hey all...
I can't even begin to write into words right now how overwhelmed with joy and amazement I am, but I'm going to attempt to because I've been too emotional to talk anymore and you all need to be rejoicing with us!!!  Tonight, at 7pm, I got a call from Kai's geneticist at Duke.  She started off by saying they hadn't been able to get a very clear picture of his brain during his MRI last Friday, as he had started to get very anxious when they got to that part and he freaked out a bit.  (in case you hadn't already heard, Kai had a major MRI Friday at Duke, and they weren't able to fully sedate him because he had eaten that morning and they had forgotten to tell me not to feed him, so he had to be in the pediatric MRI tunnel, which is 1/2 the size of a regular one, for over an hr with just valium to calm him...yeah, wasn't too pretty after 1/2 hr, so they had me climb into the tube WITH Kai for the remaining 30 min of the scan!!!  Yep...talk about a TIGHT squeeze and claustrophobia!!).  Anyways...that's besides the point.  The dr continued to say that they WERE able to get a good picture of his entire spine during the first 1/2 hr though, and they were able to clearly see the areas that they needed to see in order to see if he had the abnormalities in his cervical spine that were "necessary" to put the label of Ataxia Telangiectasia...and PRAISE GOD!!!!!!!!!!  There were NO abnormalities, so they have officially ruled out AT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  You can't even begin to imagine our relief and thanksgiving right now for a total miracle!!!  I truly believe this is a miracle too, as if you look it up on google, Kai fits the definition of the disease and the majority of his specialists were convinced this is what he had.  But God.....   I am way too emotional to talk right now, but I can't say thank you enough for all your prayers and encouragement this far.  The journey is far from over, but we'll take it one day at a time, one miracle at a time.  I wish I could begin to explain to you how much this means to us, and especially coming today.  We have had an incredibly tough past 3 days with Kai, as he seems to be completely "off" in his balance, falling CONSTANTLY, dropping everything, unable to sit at the table without falling off the chair, falling and sending bowls of cereal (full) flying all over the kitchen, and on and on.  Not to mention the anxiety of surgery this week Thursday.  I had just run with a friend this morning and cried the whole run telling her how I just didn't get why God was allowing all this and that I couldn't take it anymore.  I needed answers.  As I wept, she told me to go back and read Hebrews 12 and know that God gave me this race, and He already had it marked for me but my job was to get in His word and read the map and let Him do the rest as I left my cares at His feet.  I was reminded of all the people who God used because of their faith...something which I lack SO much of.  I'm so glad all God requires is that of a mustard seed :)  Sometimes, I don't think I have even that, but I'm so thankful for each of you, who have prayed with faith on our behalf.
Like I said...the journey is FAR from over.  Essentially, this puts us back to square 1 with a diagnosis.  They do know Kai has some form of Ataxia, but they are unsure of the specific type.  And he WILL have surgery this week Thursday.  They feel pretty strongly it's more important now than ever, as it will give us a much closer look at his muscles and what's going on with them, and hopefully point us in some direction of a diagnosis.  They are strongly feeling it's some form of mitochondrial disease, but no idea what form, as there are 1000s.  Please continue to pray for both him, for us, and for the wisdom of his HUGE team of doctors.  Please pray especially on Thursday, as he will go into surgery and have 2 biopsies done...1 as a fresh sample they will examine under microscope immediately, and another that they will flash freeze and examine later for more information.  It's a pretty major surgery for him because of his Ataxia.  His heart poses a threat when put completely under, as it can also become Ataxic and as you can imagine that would cause major problems.  They will have a BIG team of anesthesiologists in the operating room with him because of the threat, and quite a few extra hands in there with the surgeon as well, but please just pray for Kai, for his body, for healing in miraculous ways, for our strength and patience in all of this, and for his doctors to see God glorified in all of this.  Thank you in advance!!
With tearful thanks and overwhelming joy....
xoxo

And our journey continues...

November 19, 2011


So just to keep everyone in the loop...and also because I don't have the energy to explain everything to everyone right now, I figured I'd post a little update on our sweet Kai-boy.  As most of you know, it's now been 4 weeks since our re-draw of Kai's blood as the first round got tossed due to "not enough blood"...more likely which means someone in the lab dropped a vile or two of his blood, but in any case, the process of waiting started over.  Thursday afternoon, I got a call from the geneticist at Duke.  My heart jumped to my throat faster than you can imagine, but at the same time, I just wanted to know answers so it was a relief to see her phone number come up on my phone.  The call turned into 3 separate 1-1 1/2  hr conversations that afternoon with her and 2 other doctors who they have now added to our team of genetic researchers at Duke as well as our neuro-muscular specialist in Charlotte, and another 1/2 hr conversation Fri morning.  I will try to put in all in a nutshell, as a lot of it was over my head and I can't re-explain it very well, but basically they said the tests that they had done for Ataxia Telangiectasia (AT) had come back inconclusive.  They were not able to confirm or negate the diagnosis as they were hoping to, because his genetics testing came back with 2 specific gene abnormalities that they had never seen before so don't know what they are linked to.  They have ordered additional testing on those 2 specific abnormalities, in the hopes that the further examination of them might show what exactly those abnormalities are linked to, but this means another 2 weeks of waiting before any more answers on that labwork.  Then, assuming that doesn't show anything, they will also do bloodwork on both Kevin and myself to compare our genetics with Kai's to see if we both carry these specific abnormalities.  For it to be AT, BOTH Kevin and I must have the same genetic abnormalities as Kai...so we'll continue to wait. 
As much as I feel a tiny sense of relief that they are thinking it may NOT be AT now due to the tests not coming back immediately confirming that disease, they have still not ruled it out so it is still a possibility, and we are still left hanging with a lot of unknowns.  They have scheduled Kai for an MRI of his brain and spine on Dec.9, as well as a muscle biopsy for Dec.15.  We would VERY much appreciate continued prayers for some clear direction and answers from these tests, as the muscle biopsy is a major procedure with a sm 7 yr old child, and will most likely take quite a few months to recover from :(  We also may be calling on some of  you special friends here in town to help us out with our kiddos, as the MRI is an all day thing, and the biopsy will mean Kai will be spending 2 days at Duke Childrens Hospital...and because it's such short notice, Kevin will most likely be traveling for work both those weeks.  
BUT, THANK YOU sooo much each of you who have called, texted, emailed, posted little notes, mailed fun encouragement packages, and most of all prayed.  We have SO needed and felt each and every one of your love for us.  It's been an incredibly challenging year to say the least, and it's still far from over for us.  But God has been faithful, as He always is, and we've made it this far...taking it just one day at a time.  There's SO much that seems to overwhelm us .... so we have no choice but to try to just keep giving it over to Him, the ONE who created my sweet Brayden Kai and wove every fiber of his being together when he was in my womb, and HE knows what is wrong with my boy and He's got him in His arms, which I'm so thankful for every day I watch Kai fight through another challenge.  We are facing a MAJOR insurance issues come the end of December too, so we are trying not to stress that just yet... one day at a time :)  

Brief update on the journey

October 27, 2011

I wanted to send a brief update on Kai as I know you have been faithfully praying.  First, words cannot express how much I appreciate and have needed your prayers the past few weeks.  I woke last wk Thurs morning, excited that my "countdown" for the 3 wks waiting period for test results was down to just 1 more week.  Little did I know that apparently, God is still wanting to teach me some patience.  I must really suck at the whole "Be still and know that I am God" because once again last week, I got told to wait.  The specialist called me last Thurs afternoon on Kai...as you can imagine, my heart began to pound when I saw her name on my caller ID.  But much to my frustration, she called to tell me that the lab processing the DNA testing needed to confirm/negate the diagnosis had just called her to say they had thrown out Kai's DNA as they didn't have enough to complete the test, and they were going to need her to re-draw more blood and send more than she had sent the first time so that they would have enough.  ARRRRRGHHHH.  No, they didn't bother starting to process with what they already had.  They pitched it and now have to start over.  So...last week I had to take Kai back to the Duke main hospital for a big blood draw.  They have to do it at the hospital because they need so many viles of blood...5-6 viles at a minimum, most likely more.  And then they will re-submit the dna for the testing, making my wait start over instead of being 2/3 of the way done.  Apparently God feels I still need to learn a lot of patience.  The dr told me today it will be another 3-8 wks before they have results after they draw the blood tomorrow.  Please just pray for my strength as I'm feeling so beat down and worn out.  This not knowing crap is killing me.  I HATE being a "debbie downer" but this is tearing me apart inside.  I wish so much I could take this pain for my boy.  I HATE having him poked and stabbed over and over, and he is so sweet and innocent and doesn't understand why.
I would just like some answers of WHY

Another Kai update... continuing on the journey

October 9, 2011

Soooo many of you are asking for updates, and I don't even know where to begin, so just wanted to write a brief one here and then ask for some prayers...again!
So a few weeks ago now (3 to be exact), I took Kai back to his geneticist at Duke.  After a 3 hr appt, the dr looked at me and said "ma'am, you need to understand it will probably be 20-30 years before we have any answers on your son because his case is so unique."  Talk about discouraging!  20-30 years?!?!  Yep, that's what he said.  See, I thought drs went to years and years of school to only dream of having a case that should be on "House" come through their doors, but apparently not.  I have figured out the majority of them just get comfortable with the easy stuff that they can just do a checklist for and diagnose from the text books, and the rest they don't feel like taking the time or effort to research and figure out!  So, we left Duke, pretty discouraged and upset that this dr, who is supposedly one of the best in the country in his field, was basically giving up.
This past week, we were scheduled to go back to Charlotte to see our Neuro-muscular Peds specialist there.  She's the one we have seen once before, and really liked.  She took her WHOLE day with us last time, and set up TONS of follow up tests for Kai last time to be done at Duke so we wouldn't have to make the long trip back and forth every time.  Then, we followed up with her this past week for another eval and to line up more tests.  Long story in a nutshell, once again she was wonderful and spent 2 full hrs with us.  She did some lab work while we were there, which she told me would take 2 weeks to get results from, and that she was also lining up some more MRIs of his brain and spine, and then would be scheduling a muscle biopsy to find more clues to point to what was going on.  That was Tues when we saw her.  I got a call Thurs afternoon from the dr herself, and she started off the conversation with "do you have a few minutes to talk"...so I got a sick feeling right away.  She went on to ask a bunch of "odd" questions, all of which I answered but couldn't make sense of why she was asking.  Then she said they got Kai's lab results back that they did Tues (which she had told me would probably take 2 wks!).  She went thru all these ones that came back normal, so I was starting to think it was just another conversation leading back to "we just don't know what's wrong with your son" like I've had every time with every specialist over the past year...but then came the curve ball.  One of Kai's tests, his AFP, came back 5x the normal level.  In pregnant women, this is the test that is used to determine if you have a possibility of having a Downs baby, but in kids and others not pregnant, this is big in determining specific "diseases".  In Kai's case, they were looking at this to point towards some specific types of Ataxia diseases.  With his SO extremely elevated, they are very alarmed and concerned. This is pointing towards Kai having "Ataxia Telangiectasia" (don't worry, I had to google it too)...a very rare condition that is extremely progressively deabilitating and usually ends life early.  Needless to say, we are beyond broken and terrified right now.  I'm trying not to be anxious, as they haven't confirmed it for sure yet...those tests are ordered "expedited" now...they usually take 6 months to get results from but they have ordered them on an "expedited emergency" order and should have results in the next 3 weeks to confirm or disprove this diagnosis.  But we are needing prayer.  Please join us in praying for clarity, and for miracles to happen and that this diagnosis for our Kai would come back false.  I know we are praying for answers, and we are still desperately praying for those, but we are also begging God to not put this as the final answer for our boy.  And if it is, we will need prayers for strength for each day to be able to accept this and move forward, knowing that God loves our Brayden Kai SO much more than we could ever love him.  HE already knows my boy inside and out, and HE knows what we can handle.  So thank you in advance for your prayers!  I wasn't going to post this at all, but just feel like right now, the more prayers the better, and if you see us just having a "bad" day...you will understand a bit of why our anxiety levels are through the roof right now :)

My boys :) kai just finished a 1.5 mile run...thayne cheered him on proudly

Brayden Kai.... the journey begins

August 17, 2011

Hey friends...
SO many of you have asked what is going on with my boy, Kai (age 7), so rather than write it out a million times, I figured I'd write a note to try to explain a bit (in a very sm nutshell version!) what is going on.  Back in Nov.2010, Kai was taken via squad to the hospital for what we originally thought was a bad case of the flu, but turned out to be Juvenille Pancreatitis.  This is very rare, especially when there is no family history of it, so the doctors were concerned.  He spent a week in the hospital, and finally was able to come home and slowly re-adjust to a "normal" life.  During that hospital stay though, I had mentioned to the dr that I had noticed some pretty serious balance issues with Kai.  Looking back, I had noticed them his whole life, but wrote them off to "he's just a wiggly boy who likes to be active and not sit or stand still".  Doctors had told me he was totally normal both in his movements and his speech whenever I had asked, and they said he would just grow out of the struggles he had.  But that turned out to be wrong.  His balance and coordination issues continued to be more noticeable, and he even "tipped" over at school and knocked his head on a cement wall when he was supposed to be standing in line outside for an activity.  See, you and I have automatic brain signals constantly telling our muscles to fire and work to keep us still when we stand and when we sit.  Kai's has a disconnect.  His brain doesn't fire the messages, or there is a disconnect when it does fire the message, and often times his body doesn't try to correct until it's too late and he's tipped over.  Drs began running tons of tests...from brain scans and MRIs to see if he had a brain tumor, to CAT scans, EEGs, EKGs, Nerve Conduction Studies, EMG studies, and every blood test under the sun.  We've seen more specialists than I can even begin to count...and the vast majority of them tell us that "they just don't know.  Kai is a complicated and unique case and they just don't know."  That's the short version of what has gone on over the past 10 months :-)  Needless to say, it's been a long and tedious process and we are still in the middle of it with no answers.  Back in Jan, the neurologist here that is working on his case decided that he needed to see a Physical Therapist, an Occupational Therapist, and a Speech Therapist...each 1x per week.  So just in case I was bored, I added that to my schedule and we've been faithfully going to various therapies 3x per week.  We've been very blessed with incredible therapists who genuinely care and are totally wonderful with Kai, so that's a blessing!  
Just a few weeks ago, the drs here decided to send us to another specialist down in Charlotte, NC.  This particular dr is a very well knows pediatric neuro-muscular movement specialist.  She TOTALLY cleared her schedule for Kai, and she spent 5 1/2 solid hrs with Kai and I as she examined him, asked loads of questions, did lots of tests, and committed to helping us work to get some answers.  She has partnered us with more specialists at Duke who are doing a lot of the tests so that we don't have to go back and forth to Charlotte quite as much, so that's been a big blessing.  Not to mention my AMAZING friends who have pitched in to help me with watching my kids during the LONG days of specialist visits.  So now we wait again... currently, we are waiting on results from the Duke Geneticist that we had tests done with, as well as the EMG and NCS studies that he had done today.  The results of these tests will determine what muscles that they will biopsy, as they are wanting to put him totally under and biopsy some of his affected muscles to try to get a closer look at what is going on.  They have no answers, but have told us that there is a strong possibility that Kai either has some rare form of Muscular Dystrophy, or a form of Global Apraxia (I will let you google those if you want to know more about what we are struggling through).  At this point, I'm just praying for some answers.  Not knowing anything is worse than knowing, because we are stuck and unable to move forward to help him.  He's not in pain, so that's a blessing!  But he does know that something is wrong and that he's not like his other friends, and that has become increasingly difficult as he gets older.  
So...that's a short version :-)  We appreciate and treasure your prayers and encouragement.  I won't lie, it gets really discouraging and tough at times to watch my boy struggle through daily activities that you and I take for granted and can do so effortlessly.  He is a fighter, and he doesn't quit!  I'm sure that is what has gotten him this far!!  (the dr told him about 2 months ago that he would probably never ride his bike without training wheels like his friends because of his balance issues.  But Kai set out to prove them wrong.  He tried daily...with many tears and many falls, and 2 weeks later HE RODE ON HIS OWN!  He's out to prove them all wrong!) :)  I couldn't make it through each of the long weeks without my amazing friends...you know who you are...who have sacrificed time and energy to watch my other kids for hours and days on end so I could take Kai to all his appointments, who have cried with me and just listened as I vented.  You each are a blessing!  Thank you!  Please continue to pray that the doctors will be able to find some answers SOON!!  
I will try to keep you posted .... :-)