Introductions and praises...

I've decided I need to just stop saying I'll try to write more frequently, because the reality has set in that although I have good intentions of doing that, it really won't happen so I will settle for updating periodically and being happy with that :)  I know this blog started for my friends and family, and maybe even some strangers who just might be walking a tough road and need to know someone else out there is walking it with them... to let each one know the story of our struggles and triumphs as we walk this road full of unknowns with our son, Brayden Kai, who has a VERY rare neuro-muscular genetic condition called Ataxia with Oculomotor Apraxia Type 2.  But over the past few months, I've had it on my heart to introduce you to Kai's other siblings.  After all, they are walking this road too, and they've each got their own personalities, differences, uniquenesses, and ways of coping with their brother's "illness".
My original intent was to introduce to you to my oldest daughter, Kalia Brynn, first... but as we all know by now, I don't do very well of writing often, and some things (which you will read about shortly as you keep reading!) have changed that plan and I'm going to start at the bottom... with my son Thayne Kekoa.  Thayne is 4... a little bruiser, all boy, and full of life and energy and loves to do all the typical things boys do with balls, Legos, swimming, climbing, tumbling, and wrestling!  Thayne's best buddy in the world is his big brother Kai.  Everything Kai does, Thayne wants to do too (much to Kai's dismay often times!).  Thayne also has an incredible heart of compassion and empathy.  All he knows is Kai struggling, so for him, that's just life.  We first started noticing struggles with Kai right after Thayne was born, and the hours upon hours of hospitalizations and tests began shortly thereafter, so that's all Thayne knows.  He's spent more hours in hospitals and traveling to and from doctors appointments that aren't even for him than any other child I know, yet he never complains.  He's made it his life mission to help his big brother in any way he can... from reaching him things, to making sure Kai's taken all his meds every day, to even asking to change from the bottom to the top bunkbed so that his big brother doesn't have to struggle as much to climb in and out of bed (we live in a smaller home where all our kids have to share bedrooms, so there's no choice but bunkbeds!).  If you've ever met Thayne, you know he loves to talk if someone will just listen... and he's got a wild imagination so just be prepared to listen and laugh :)

So here's the reason I started with Thayne... not only is my "baby" (well, he's not so little!  He's bigger than most kids in 1st and 2nd grade, including his 2nd grade sister!), but these past few months have been quite a journey with him.  About 6 months ago, we started noticing some similarities in Thayne that resembled a lot of the struggles that Kai first displayed when he was 4 and we started taking him to specialists around the country to try to figure out what was going on.  With Kai, they did EVERY test under the sun, from telling us they thought he had a brain tumor and doing CT scans and MRIs of his entire body to try to figure out where the tumors were, to muscle biopsies, to labs (the poor boy literally had pints of blood drawn over the course of 4 years to send off for tests!), to x-rays and nerve conduction studies and everything in between.  We've watched Kai's disease progress since he was 4, so we're pretty clear on what we saw and how his disease has progressed.  Our fear with Thayne was that we were starting down that same road.  In all honesty though, I was terrified to even admit my other son may have the same disease, so I pretended not to notice.  Every time he'd randomly just fall, or walk into walls, or display some of the same mannerisms as Kai, I'd try to block it out.  See, it took over 4 years to get a diagnosis for Kai, and only in January of 2013 did we finally have an official diagnosis to help direct us to understand his struggles.  That was right around the same time I began noticing Thayne's struggles, and I was still processing Kai's news, so couldn't emotionally handle anything else.

Fast forward to this spring.  I was having a really hard time ignoring Thayne's "coordination" struggles anymore, but somehow I had managed to keep it to myself.  Then, a specialist who has been walking this journey with Kai since the beginning with us, happened to notice Thayne in the room with Kai as we were there for an appointment.  She paused in our conversation, observed, and then looked at me.  The minute she looked back at me, my heart was overwhelmed because she didn't even have to say a word.  I knew what she was thinking.  Her words only confirmed that.  She, and I, were both afraid Thayne may have the same disease as Kai.  So although it's an incredibly rare disease, we've also been told that there is a 1 in 4 chance that each of our other kids will be diagnosed with the same disease.  Since we've been walking this road with the same amazing team of specialists at Duke for 4 years now, they know me by name (yes, our lead one even has my name on speed dial and answers "hi Heather!" when I call!), and they are in this for the long haul with us and would bend over backwards for us.  So I called.  I was greeted with the same "hi Heather!" as usual, but as soon as I started telling her my concerns regarding my little Thayne, my voice broke and so did hers.  She and I talked for over an hour about whether or not to have him tested, or to just wait a bit longer.  And we both agreed that the only way to ease my mind and fears was to bring him in and test him.  Like I said, she's amazing and would bend over backwards for us, and she did!  She was going to be in clinic that Thursday (it was a Friday when I called her, and they are only in clinic 1x per month in the Duke location near us!), and although her schedule was over-booked, she told me to come in early before her first patient, and she would see my little man Thayne and do an initial evaluation, and do his blood tests to see if he had AOA2 like Kai.  The next few days were a blur. It was a God thing to have an appointment that quickly, but I also knew that we were facing yet another long wait.  She told me the wait would be at least 8 weeks, possibly longer.
So we went to Duke, had the tests drawn, and began to wait.  We only told our very close friends and family.  Honestly, I couldn't handle anyone asking me any more questions, or asking me whether or not the labs were back.  I just needed people to pray, and I needed my close friends to just understand if there was days I just needed to melt down and cry, or go for crazy long workouts with no explanation.  I said from the beginning I don't believe in painting a pretty picture, but instead I believe in being raw and real... living life without blinders.  The next 8 weeks were not pretty.  I tried desperately to hold on to the promises I know that God gives us... that He will be there every step of the way, and He'll never give us more than we can handle, and that He will give us strength for each day (and moment of each day!).  But I must admit there were many days I had doubts.  I asked a lot of "whys".  My mind filled with fears and what ifs... how would I cope with 2 boys with the same disease, both ending up in wheelchairs within a few years time?  It was the prayers and encouragement of my close friends and family that walked me thru what felt like the longest weeks ever.  That was the beginning of June that it all started...
I mapped it out on my calendar... results were due in around the end of July or early August, IF labs ran on time and didn't mess up.  I also knew from experience with Kai that the lab often messes up and has to do re-draws on the blood, or just takes way longer than they originally say.  I've learned to wait.  But I was hopeful for the 8 weeks... I had planned to drive my kids up to Canada to see my family and spend time visiting family and friends for 2 weeks over my kids track out at the end of July/early August.  That way, if the results were delayed, at least my mind was occupied.  I had e-mailed the specialist my numbers at the cottage "just in case", since I don't have any cell reception of my own up there.  I sent that message full of doubt, but figured it couldn't hurt.
I don't know why it always amazes me how perfect God's timing is, but somehow it does.  This time was nothing different.  I had gone for a long run alone on the hills on our second to last morning at the cottage.  My parents had gone for a jog together before me, and Kevin had agreed to watch the kids.  My parents came back and were hanging out catching their breath before heading down to join Kevin and the kids at the water, and I was still out running... and the phone rang.  Now you have to know, when we are at the cottage, there is hardly a single minute we are actually inside the cottage unless it's raining, especially at 11am.  Yet again... God's timing that my dad and mom had just walked in the door from their run!  Dad answered and as soon as he heard the woman say her name, he knew he needed to get either Kevin or I, and since I was gone, my mom began shrieking for Kevin (yes, she shrieked!  it's a huge lake and I'm pretty sure the rest of the lake knew she needed Kevin!  hehe!).  Kevin ran up to the cottage (some ungodly amount of steps!), and anxiously answered the phone.
Just to keep you in suspense like I was ... I'll remind you I was out for a long run alone, with no phone or access to anyone!  I came back to find my dad still sitting in the cottage, and all he says is "Dr. McConkie just called.  I think you better go find Kevin."  (and Kevin was out in the kayak by this time!)  AHHH.  I didn't know whether to throw up or cry or swim out to the kayak to find out what she had said.  I suddenly didn't know if I wanted to know, because if it was bad news, I was too tired to go run more miles and cry it out, but if it was good news, I wanted to know.  Kevin finally paddled in, parked the boat, and began to tell me.  She had called... the test results were in... and Thayne Kekoa did NOT have AOA2!!!!!!!!!  I must admit I stood there in shock.  There was a million things I wanted to say and do but my body froze.  I couldn't do anything but just stand there!  It wasn't until my mom wrapped her arms around me and began to sob that tears of joy and incredible relief began to fall.  I don't think I fully realized the weight of fears that were weighing on me about his tests until the results came back until that moment I felt them lifted.  I cannot describe it, but I do know that the only thing that kept flooding my mind was "thank you Jesus".  I've thought many times since that moment... "would I have been able to say Thank you Jesus if the results had been different?  would I have been able to trust that my God knew and knows what He is doing, even when the tests don't come back like I ask?"  I don't know.  I wish I could say a confident yes to both of those questions, but I don't know.  One thing I do know today though, is that I'm beyond thankful for the clear test results for Thayne.  And I also know that I still hold on to the promise that He will carry me moment by moment, giving me strength for today and hope for tomorrow.

On a side note, some friends have asked, and you may be wondering the same thing... have we had our girls tested?  The answer is no.  We do not plan to unless they begin to show symptoms or unless they go to get married (it's important they know they as they will need to make a choice of how to tell their future spouse and also they'll need to make informed decisions if and when they decide to have children of their own).  But for right now, I'm choosing to rejoice in Thayne's news, and take each day one moment at a time with Kai's struggles... and I'm thankful I have each of you covering us in prayers and encouragement!

Game ON!

So LOTS of you have asked what all the situation with insurance is, and rather than explain it 100x over, I figured I had just recently messaged a friend with an update, and it's pretty comprehensive of the struggle we're fighting, so I figured I'd just copy and paste it here :)  So... here's the news, the frustrations... and the blessings in the middle of the storm.

So it's a REALLY long story, but I've realized now that the only way we're going to get people to help us fight is to really tell the whole thing and see if anyone we know can help, or may know someone who can help us. So here goes...
As you know, we've been struggling with medical issues with Kai for over 4 years now. For 4 full years, he was put thru constant test after test to try to figure out what was wrong with him and what was attacking his muscles causing constant struggles for the poor guy. We have had an incredible team of doctors and specialists at Duke that have been walking this road with us for 4 full years now, and finally, Jan. 4 to be exact, after waiting 8 months for test results from a VERY highly specialized and expensive test, Kai was diagnosed with Ataxia with Oculomotor Apraxia Type 2 (aka AOA2). This is an INCREDIBLY rare disease here in the US, with only 2-3 specialists in the world who have knowledge and treat patients with it. (so back in March I had to fly out to CA with Kai to see the leading specialist in AOA2 that is here in the US... there is NONE closer than that!!)
Three years ago, when his condition began to progress more rapidly, his team of doctors started him in therapies. First, it was just physical therapy, but within a very short time, it progressed to occupational and speech therapy as well. When all of this first began, Kevin's job was really struggling and since he's commission based salary, he hardly made enough to make ends meet so we qualified for Medicaid. We realize now how much of a blessing that was. We never had ANY trouble at all with both doctors or therapies being covered. But as his job got better and he started earning a bit more, we slowly edged out of eligibility from Medicaid, and about 2 yrs ago now, we became fully dependent on Kevin's work insurance, which is United Healthcare. So... for the past 2 full years, I've been fighting insurance with fight after fight to get them to cover various expenses and specialists that Kai has had to see, and tests that they have had to do. Well, this year has been no different, but this year it's become a nightmare. When Kai's doctors at Duke figured out his diagnosis (finally) back in January, they quickly realized with their research that the ONLY treatment for his condition is therapies on a daily basis to try to keep his muscles strong for as long as possible to try to help slow the inevitable progression of his disease. In fact, one of the specialists said that IF I had not been diligent in getting Kai his therapies every week for the past 3 years, Kai would most likely already be in a full time wheelchair! So, it's definitely a necessity, esp since there's no medications or other treatments known to help slow the progression. His Duke team prescribed THREE of each therapy every single week! Yes, 3 of PT, 3 of OT, and 3 of ST. As you know, Kai is not an only child, so logistically, if the therapies couldn't be done at our home or his school, there's no way that I could get Kai there for 9 therapy sessions per week, so for now, we have stuck with 1 of each discipline per week. Up until 2 weeks ago, his therapy team has been amazing and had been doing all 3 disciplines on the same night to try to help me minimize the amt of time both traveling back and forth, as well as sitting at therapy, so we were doing a long 3 hour session of PT, OT and ST on Thursday evenings. Well, 2 weeks ago, apparently United decided to contact Abilitations (where Kai does all his therapy) and tell them that effective Jan.1, per their new contract, they were not going to cover multiple therapies done on the same day, as well as that Kai had a MAX of 20 PT and 20 OT visits per year total, and that was a hard and fast rule, and they were not going to cover a single therapy beyond that 20 visit max and it would be 100% out of pocket for us... $120 per hour per therapy! Oh yeah, and add to that they said he reached that 20 visit max back in March... so not only would they not cover anything beyond that, but they were only going to cover 1 of the 3 sessions he had per week (since they were all done on the same days) dating back to Jan... 6 months! 
So... I've contacted United more times than I can possibly count over the past 2 years, and EVERY time they have told me something different on how to appeal and how to fight, etc. So this time has been no different... only this time they also said that they have NO record of ANY of the other appeals I've filed over the past 2 years (and there's been at least 6!!)!!! Last week, they transferred me to an "upper level escalations management", who again, told me something totally different but also said he finds no record of ALL the other appeals I filed over the past few years regarding his therapies and that I need to get new current letters from all Kai's doctors, as well as current therapy notes and letters, stating his need for additional therapies beyond the 20 max. He then stated there's nothing he could do about the multiple therapy sessions in a day not being covered. As of last wk, I am now having to take Kai to 3 separate therapy sessions on 3 separate days of the week, not to mention the 4th counseling session that he now has to go to bc of all the stress this is putting on the poor little 9 yr old, that insurance is also denying payment coverage for. 
So today... when we arrived for his 3rd therapy session of the week, I was greeted with a $120 bill that I had to pay up front, as well as news that they had just gotten yet another call from United today also stating that effective immediately they are also not going to cover any long term therapies for any of their clients. Kai's disease is a neuro-muscular degenerative disease, that is only going to require ADDITIONAL therapy sessions as time progresses. There's nothing short term about it. It's a lifelong deabilitating disease. 
The thing that sickens me most is that if I were to lie and file for Medicaid as a single mom of 4, or if I were to be divorced, or if Kevin were to just quit working and collect unemployment, I would immediately get the benefits and coverage I need. But because we are both hard working parents who bust our chops to provide for our kids the basic necessities and healthcare they need, we are penalized by United, even though we pay astronomical monthly fees for the coverage we have. 
Ugh. Sorry to vent. That's just the story in a nutshell (a big nutshell I know  ). The other sickening part is that it's not just us suffering with all this. There's at least 20 other families at Kai's therapy place alone that are affected by United's stupidity, but most of them don't have the will to fight, and a lot of them are so exhausted by the medical situation of their child at home with special needs that they don't have the time or energy to fight it so they give in and just don't continue the needed therapy for their child. So I'm setting out on a mission to fight, not only for me, but for the other families with children who are extra special like mine. I'm determined to get the word out about how UNFAIR the united healthcare system is. I'll make our story known and heard and try to be a voice to make a change. Anything you know of or can do to help would be awesome! 

So... the above was written yesterday night (Thursday).  Today, Friday, I finished organizing 58 pages worth of documentation from Kai's medical professional team and faxed it to the "escalations team" at United Healthcare.  I've lost my soft and gentle side with them, and I've become very demanding and stubborn for immediate responses, because I've realized that's what it takes to get their attention.  I told them today that I wanted a phone call confirming their receipt of my fax, as well as I needed an immediate response to my request within the next 3 business days.  So here's the cool part... that fax took 40 minutes to send, so I had some time to chat with the Office Depot employee working on submitting it for me.  By the end, she was frustrated on my behalf, and only charged me half price for the fax!  In case you don't know... sending a fax is anywhere from $1 - $1.50 per page!  That adds up quickly with such a large fax, so her gift of the discount to me was a HUGE blessing!  
Then, within 30 minutes, I had a phone call from an escalations manager at United.  Maybe he realized by the size of the fax that I wasn't messing around, or maybe he realized when I told him in the cover letter that I was going to be filing a complaint with the National Association of Insurance Commissioners if I didn't have answers by next week... but whatever it was, he called to confirm that my entire fax had come thru and that he was submitting it to the appeals department marked urgent and we should have an answer within 3 business days!  Yep... so now, we wait, and pray for favor, and continue to gather ammo for the fight!  I don't plan to let this fight go with just myself.  There's WAY too many other families out there who are being affected by a healthcare plan that is highway robbery, but they are already so worn out and beaten down by their child's situation with special needs that they have nothing left in them to fight.  I guess God gave me a stubborn and strong will for such a time as this :)  I will fight.  I will fight for all the other moms and dads, and extra special children who need a voice.  I don't do bullying... and I won't put up with those that need help the most being bullied by a ridiculous healthcare company who is just banking off their customers.  So IT'S ON!!!  

Gifts

May 3, 2013

So once again, yes, I let a whole bunch of time go by without writing.  Once again, the incredible chaos of this roller coaster ride of life filled my hours, days and weeks.  But I'm thankful for that time.  The past few weeks have been some of the most challenging, yet incredible weeks of seeing God's fingerprints.  So buckle up and hang on as I fill you in on the ride...
So I left off last time filling you in on our California trip.  We arrived home to jump right back in with both feet running to our schedules of doctors and specialists and loads of other commitments with our other 3 kids.  I have to pause here (in my scattered thoughts... it'll make sense later.  promise!) and tell you about this amazing constant I have in my life.  Every week, Wednesday afternoon, I meet with this amazing group of girls to share life, pray, and dig into the Bible.  It's time that's precious, and I've grown to love each of the girls with my whole heart.  They are the most sacrificial, genuine, raw, real, loving, fun girls who love Jesus too, and we're all walking this journey called life together.  One of my dear friends, who has listened to me vent and cry over this journey with Kai more than any one person should ever have to do, decided about 5 months ago that she was going to organize 1 meal a month for our family from our circle of girls.  Can I just tell you how AMAZING it is to have one meal every month brought piping hot and SO yummy to your door?!  Honestly, it's an incredible blessing to have just one night that I don't have to stress making my kids dinner after our wild day of work, school, therapies, doctor visits, mom duties, and everything else in between.  They have also challenged me in some incredible ways.  We've been studying the death and resurrection of Jesus, and all the incredible suffering He went thru the past few weeks leading up to Easter.  I know the story of the cross.  I've heard it a million times.  But this time, it hit me hard.  I ask a lot of "why" questions right now.  There's just some things I don't understand.  And I don't think for a minute that those "why" questions are wrong.  But I've come to see just a tiny glimpse of Jesus' sufferings, and how He went thru it all so that He could 110% say with total and complete accuracy that He understood and He'd been there.  I'll never be able to fully understand, but I do know He felt alone.  He felt abandoned.  He felt rejected.  He felt the pain, both physical and emotional, of losing ones He loved.  He felt betrayed.  There wasn't a feeling He didn't personally experience.  So He gets it.  He knows my pain, and it hurts Him too.

Those were significant truths I needed to see these past few weeks, because quite honestly, I was at the end of my rope and beyond exhausted and burned out.  I am a pretty raw person, and I hold nothing back in saying that I was really struggling to believe that a good God would allow a mother to feel such pain as she watched her child suffer, with no known treatments, and no known cure to a disease that there's hardly anything known about at all.  And then we followed up the study of Easter with a new study we're working thru now... it's called "One Thousand Gifts... a dare to live fully right where you are" by Ann Voskamp.  I read the book a while ago, but honestly it was pretty deep for me and hard for me to grasp (I'm not a very deep reader... not enough attention span for reading!).  But this time we're doing the study.  And I know it's what God had in mind just for me to help to change my attitude of discouragement.  It's on grace, thanksgiving, and joy... Eucharisteo.  So I said this would make sense... all my garble... and here's why I open with this.  I'm working to change my focus to looking at the incredible gifts I already have and being thankful for them in the moment, not fearing the future.  That's much easier said than done, and no, I haven't come close to mastering it, but days like today, I have to hold on to things I'm thankful for, so I'll start this post with some incredible thanksgivings of God's fingerprints the past few weeks...
I mentioned the meals.  Seriously, and fellow moms can appreciate this, they are SUCH a blessing.  Due to a commitment I made a year ago to help coach what has grown to be an incredible program to help women complete their very first triathlon, my work schedule suddenly quadrupled, not to mention the client load I already had (for those who don't know, I work at the Y as a personal trainer, swim coach, and USA certified triathlon coach... my passion!).  I'm incredibly thankful for the extra income it's provided for our family and for the medical bills, but it definitely added a big stress to my already wild schedule, so meals have been HUGE!  Kevin works incredibly hard to make ends meet, but because of the nature of his job, he also travels most weeks for work, so evenings are overwhelmingly tough sometimes.  Oh yeah, even pizza delivered to us after a WILD week by a dear friend who knew I was struggling!
Then there have been these INCREDIBLE blessings of encouragement letters, text messages, Facebook messages, phone calls, and handwritten notes arriving on just the toughest days I've needed them.  Some have even included incredible sacrifices of generosity that I couldn't have in my wildest imaginations asked God to provide... gift certificates for meals, gift cards for iTunes to get Kai something new to do while he's visiting so many doctors, and AMAZING monetary gifts to help with our ever growing medical bills!  Even things like my kids getting "gifted" the season of soccer so that they could all play something they love but that we just didn't have the money to be able to do this season if it weren't for a dear friend who's walked a tough road of her own and understands first hand the stress of growing medical bills so provided the season to my 3 more than thrilled little soccer junkies!  And Hope Reigns, a free horseback riding therapy that has been an incredible blessing to Kai!  Wow... speechless.  And honestly, each one arrived on some of THE toughest emotional days for me, so such a little whisper of my Father letting me know that He knows and He cares.

Then there has been incredible friends who have helped research and contact agencies and foundations to try to help me figure out what things are worth chasing and what's not to try to best facilitate the needs that Kai has both now, and will have in the future, especially with expenses looming of moving (finding a more accessible home for Kai's growing needs), supplies he will eventually most likely need (walkers, wheelchairs, ramps, etc), and even friends helping me with creative ways to do therapies with Kai at home since I get burnt out with it on a daily basis.  Again... His fingerprints... that precious time I didn't have to research was sacrificed and gifted to me thru someone else's help.
And then there's the INCREDIBLE honor given to Kai as he was spotlighted by our Wake County school board, and was presented with the Wake County Spotlight on Student Award for 2012-2013.  "This award is only given to individuals who go the extra mile and expend that extra energy to achieve success..." (written by the school superintendent).  Kai was honored at the Board of Education meeting right after we got to celebrate his 9th birthday!  His teacher had nominated him without us even knowing, and he was chosen by the school board out of kids 3rd - 12th grade to be honored for his hard work.  It was an emotional evening, full of proud tears as my boy was recognized with a speech given about his situation, and how he had been nothing short of an over-comer and a fighter with an incredible attitude and determined spirit.  Things like this make a mama proud, and overflowing with thanks that people DO indeed recognize the struggle and the fight my little man goes thru daily.  Fingerprints...
 

(above- Kai with the superintendent... below- his award!)

 (above- Kai with his amazing principal and assistant principal... below- Kai with his INCREDIBLE teacher)

So I know, I know ... you're tired of my list and my pictures :)  And yes, I intentionally left today's doctors visit to the end because I'm still working on processing it all and finding the joy in today.  So today was a visit that has been scheduled since January 4, the date of Kai's initial diagnosis.  It was a BIG one.  We met with THE head of the MDA (Muscular Dystrophy Association) clinic.  I know, you're already asking why the MDA when he doesn't have Muscular Dystrophy.  The nutshell is that the MDA was names ages ago when all they saw, treated and helped was MD patients.  But they've broadened their umbrella now, and now they see a few other diseases, including a handful of types of Ataxia.  (remember, Kai has Ataxia with Oculomotor Apraxia Type 2... aka AOA2).  We knew going into this appointment that the MDA didn't recognize AOA2 as one of their diseases under their umbrella of coverage, but our prayer was, and still is, that they would accept Kai as an "exception" to the rule since his disease is so incredibly rare.  IF they were to accept Kai as a patient on the MDA approved list, then as Kai needed "supplies" (walker, ramps. wheelchairs, etc), the MDA would provide those to Kai to "borrow" at no charge.  HUGE.  Those things aren't cheap in case you were wondering!  :)  So... today Kai and I went and met with Dr. Smith, THE head of the MDA clinic at Duke.  He was wonderful.  He had obviously done his homework and researched a lot about Kai, his history, his tests, his other doctors... everything.  You name it, he had researched it.  He was incredibly personable too, which if you've visited any specialists, you know this is an incredibly rare gift as most of them have all brains and zero bedside manner.  He was genuine and cared and listened and answered in terms I could understand.  Amazing.  But he couldn't approve adding Kai to the MDA approved list.  Apparently the MDA has had a significant cut in their budget and grant money available, so they've had to crack down hard, and right now, he has no power to add Kai to their approved list.  Ugh.  So yes, this is incredible frustrating and discouraging, as it leaves an overwhelming future of needs ahead, but I also know that God is bigger than this.  He's provided up until now, so I know somehow and in some way He will continue to provide.  I'm also incredibly thankful for Dr. Smith and his heart, as he's agreed to keep Kai on as one of his patients, even though he's not an MDA approved one.  This is HUGE!  Dr. Smith is a highly specialized Neuro-muscular specialist, so being one of his patients will help us be able to eliminate at least 3 of Kai's other doctors as we can get all 3 of them in just 1 Dr. Smith!  

So... tonight I'm working hard to focus on the gifts I have.  I won't pretend I'm good at it, but I will say I'm trying, and some days are better than others, and some moments better than others... for tonight, I'm thankful for His fingerprints.

Kai celebrated his 9th birthday with some awesome friends... then an overnight beach trip with his siblings (thanks to some freebie nights earned bc of Kevin's constant travel)!

history in the making

Yes, I will start by apologizing that I am WAY behind on blogging!  Life just seems to be WILD non-stop without a minute to breathe and sit to write, and when I do have a minute, I'd rather be sleeping than writing :)  But tonight, I'm committed to taking a few minutes to catch everyone up since I feel like I've been writing the same msg to everyone who was anxiously waiting word on our doctor visit to Cali!
Let me back up a bit... the week before Kai and I left for California, I had my final fight with the school regarding the IEP (individualized education plan) that I've been fighting to get for Kai for over 3 years now.  Consistently, the school board has denied the request stating that with no diagnosis and a child that is very intelligent, he doesn't need one.  Each and every time we met, I fought long and hard, armed with doctor's letters, testing results, and everything else I could think of (even an attorney from Duke one of the times!) to try to prove to them that my son needed the IEP because he wasn't performing at his potential level, and every day was a struggle that he would fight thru to be "normal", and then would come home and cave in with tears and extreme fatigue.  See, Kai's disease makes EVERYTHING you and I do 100x more challenging.  Just to stay seated in a chair, or standing in a line, or even sitting upright on the floor requires an incredible amount of energy because his muscles just don't want to work right.  Actually, it's not so much that they don't want to, but there's a misfire and they can't do what the brain tells them to do.  Even eating is challenging, causing incredible messes with every meal because he has to focus on staying seated in a chair, as well as trying to make the muscles of his mouth work properly to chew and swallow.  So saying he has to fight just to survive is not an exaggeration.  He could easily throw in the towel and say it's just too hard and he doesn't want to do it anymore and needs someone else to do it for him.  But that would be quitting.  And that's not my Kai.
So back to the IEP... I've been fighting, and over and over, I have gotten denied.  He was finally approved last year for some adaptations (elevator use instead of stairs, non-slip seat cover to help keep him from sliding off when he lost his balance, etc), but still no IEP.  The IEP would allow for modifications and adaptations to every area of his school day... like one on one testing so he can use the bathroom as much as needed and stand, sit or lie down depending on how his body needs to adjust to be able to focus, a scribe to write while he speaks bc holding a pencil is incredibly challenging (not to mention trying to keep balanced in a chair AND hold the pencil to write legibly), frequent breaks to allow him to rest his focus and collect himself, some physical and occupational therapy in the school setting, modified seating so that he can lean on an arm rest to balance, a personal laptop at his desk so he can type even just his short answer responses on worksheets so he doesn't have to try to write them... these are just a few of the things I was fighting for.  When we finally got a diagnosis in January, I armed myself with a whole new team of doctors willing to fight for the IEP for Kai and began the fight yet again.  And this time, after 3 months of testing and fighting, and much prayer from a LOT of people, we finally won!  That was a HUGE victory for sure, because now that he is approved, by law, ANY school system that he is in from now thru his high school graduation is required to adhere to his individual plan, and we also made sure that his plan could be changed at ANY moment I requested since his disease is rapidly changing, so that is also a blessing.

So...finally the update you've been waiting for!  California!!  

Let me back up and say that if it weren't for some INCREDIBLE friends, the trip to California would have never been possible.  A lot of you are probably wondering why in the world we would need to take a trip all the way across the country to see a specialist when we have Duke and UNC hospitals right here in our backyard.  Well, they are incredible hospitals for sure, but they are also limited in their expertise, and since Kai has been diagnosed with a disease that only 20 other people in the entire United States have ever been diagnosed with, there's not a lot of specialists in the US, let alone in the world, who even know anything other than what you read on google.com about the disease.  See Kai was diagnosed on January 2, 2013 with Ataxia with Oculomotor Apraxia Type 2 (AOA2).  Problem #1 is that Duke had NEVER seen a patient with this diagnosis, and the information they were giving us was just google.com articles because they didn't know what else to do.  Problem #2 was that since this disease is SOO incredibly rare, they didn't even know if he really had it or if he had something else and they were just settling for this diagnosis because it has no specific diagnostic test but just a series of tests and symptoms that all have to line up with the correct answers to point to this diagnosis, so by mid February, we were at only a 50/50 chance that this was the correct diagnosis and they were looking at going back to square 1 of testing all over again... what we spent the past 3.5 years doing, not to mention over $60,000 in out of pocket expenses!  So I began my quest to be smarter than the doctors here.  I began researching, and calling, and e-mailing EVERY doctor's name that I could find on every possibly research article on AOA2 that I could find.  It was slow beginnings at first, but slowly I started getting responses... first from doctors in France, and then from a researcher on AOA2 in Minnesota, and then a parent who has 3 children with AOA2, and finally a doctor and specialist in AOA2 in California.  See, there's only 3 researchers in the US that are currently educated on and continuing to do active research on this disease.  Most doctors have never even heard of it, let alone seen a patient with it.  And when I finally connected with this doctor in California at UCLA who is not only a researcher for AOA2, but also treats 3/4 of the patients in the US with this disease, I knew we had to go see him.  Even he had his doubts that Kai really had AOA2.  Up until Kai, the youngest patient in the US diagnosed with this incredibly rare degenerative neuromuscular disease was 17.  Kai is only 8, and has been noticeably displaying symptoms for nearly 4 years now.  

So Dr. Fogel offered to see Kai, if we could just make it out there to UCLA.  Remember earlier I mentioned how much we'd already paid out for medical bills?!  So yes, hiking out to California to see a doctor wasn't really in the budget, not to mention our other 3 kids that needed to stay home and be taken care of.  So enter our angels... my mom offered to fly down and tag team to help Kevin with the other 3 kids, and despite coming down with a very violent flu while here (another story for another day!), she was able to help keep the house under control.  Kevin filled in the gaps, and my friends Lisa, Eli, and Leslie jumped in and loaned a hand when my mom had to leave early!  And my incredible angel friend Carla, who works for Jet Blue, offered to give Kai and I two of her precious buddy passes that she is given as a "job perk" each year.  She's only given a very limited few per year, but she didn't even pause to think before offering two of them to us!  Then, we had an incredible load of friends in California offer us places to stay!  We ended up rotating houses each night, staying with a cousin and his wife and 2 kids that I hadn't seen in 13 years, staying with a precious friend and her parents and family that I hadn't seen in over 3 years, and even crashing one night in a bachelor pad of my youngest brother's friends from high school that I'd never met before showing up at his door :)  Kai and I made memories together for sure!!  I made sure to surround the doctor's appointment with fun... trips to the beach, Santa Monica Pier, lots of fun burger stops at In N Out and Jack in the Box, ice cream at Diddy Riese, sleepovers with his long lost buddy Cameron, and the icing on the cake was his trip to Legoland as his early birthday present!!  Even that, God provided us with buy 1 get 1 coupons to be able to afford to go!

So surrounded by fun, we had the doctor's appointment.  Dr. Fogel spent the better part of 3.5 hours with us.  He examined Kai, asked a lot of questions, had already done TONS of research on Kai's situation from the medical records we had sent over, and he took a look at all Kai's MRI and CT scans that we had brought with us on digital copy.  He was incredible.  He explained everything he did, everything he saw, everything he had noted on Kai's previous tests.  He crossed every t and dotted every i.  Then, he delivered his news.  We were history in the making.  He is 99.9% certain that Kai DOES indeed have AOA2.  Not only is his 1 of only 20 documented cases in the US, but Kai is THE youngest person EVER documented in the US with this disease.  He continued on to spend well over another hour answering my questions and helping us to understand what this means.  Since he has 15 of the 20 AOA2 patients, he knows what he's seen, and is the best person possible to answer our questions and help us monitor Kai's progression.  

I feel like I need to pause and say that although the news hit me all over again, but somehow in a totally different way from the first time, there's a few things I'm thankful for.  First, is that for now, Kai won't have to go thru any more testing.  Everything from here out with be just to monitor progress, unless something else random and rare begins to present.  After 4 years of non-stop testing, THAT is huge.  Second, the doctor looked at me straight in the eyes and told me that if I had not persisted in taking Kai to therapies (PT, OT and Speech) consistently for the past 3.5 years now, and also done therapy on him from home, he would absolutely without a shadow of a doubt be using a walker to walk, if not fully in a wheelchair by now.  I wish I could explain to you the relief and feeling of "at least I did SOMETHING right" that crashed over me in that moment as he was talking.  As I fought back tears, I quietly thanked God that all those MANY weeks that I just wanted to throw in the towel on spending 3 hours a week in therapie , for $300 per week out of pocket expenses (that's well over 200 hours of therapies and thousands of $s of expenses!)  just to take him there... they all were worth it.  As a mom, the whole trip was worth it to hear that I had done SOMETHING right to help my little man fight harder and longer.  

So our history maker journey continues.  Currently, there is no cure.  AOA2 is a very degenerative condition, where Kai's brain will continue to function at an extremely intelligent level (much like ALS), but his body will continue to deteriorate and weaken in it's response to his neuromuscular signals until eventually he will be confined to a wheelchair needing care around the clock.  But I'm refusing to stop at that.  Because it's so rare, there's VERY little known about the disease, and very little research being done.  So I will make it my new mission to inform and make people aware, and begin to raise money not only to help us support Kai's ongoing and ever increasing medical expenses (therapy will forever be a weekly thing, eventually being multiple times per week!), and also looking to raise money for research to be done on AOA2 to hopefully and prayerfully find a cure one day.  So please feel free to share our story and pass it along!  It is my prayer that somehow, thru the incredible pain of this journey, that we would continue to be able to see God's fingerprints in not only our story, but in how God uses Kai's determined spirit of a fighter to encourage and strengthen others.  

So how can you pray... please cover Kai in your prayers for his struggles with this diagnosis.  He knows and is understanding more and more of what it means every day.  He is brilliant.  I don't say that because he's my kid.  He really is (trust me, he's had all the tests done!  lol).  So he knows that his brain is telling his body to do something but his body isn't responding the way he's telling it to.  It's causing incredible struggles with depression.  In fairness to him, I'm going to leave it at that, but please pray for him, and pray that we would have wisdom in walking beside him on this incredibly tough road.  I don't have answers for him.  In fact, I'm struggling with the same questions of "why" that he is.  This is a lifelong diagnosis, so the questions are big and probably will never be answered this side of Heaven.  But we both have to move from the grief and anger stage, to acceptance   Whatever that may look like.  And that's a lot easier said than done. 

Not Parts, but the Whole

February 20, 2013

The past few weeks have been rough.  REALLY rough.  So rough I had found myself angry with God.  Wondering why... Why Kai? Why me? Why this disease that has no definitive diagnostic test and then has no answers?  What kind of loving God would allow this mess to happen to a family, any family, not just my family.  I had watched Kai struggle, facing one of his "slumps"... see, his disease seems to go in waves of good and bad times.  What I mean by that is that he seems to plateau for a bit, then everything seems to fall apart even worse with his balance, his coordination, his speech, his muscle control, etc.  It stays bad for a few weeks, and then usually seems to come back up to a plateau ... not quite as good of a plateau as before the slump, but at least a bit better than at the bottom of the slump.  Then the cycle repeats.  This time, the slump seemed a lot worse.  I don't know if stress plays a part, or if the disease is just taking more of a toll, or if I'm just more aware of it each time, but it's definitely been a tough slump.  I want to try to respect Kai's privacy to an extent and not embarrass him at all, as I know one day he may look back and read his own story via my blog posts, so I won't go into detail on the events, but just understand it was a daily struggle in every way... physically, emotionally, spiritually, monetarily, etc ... it was rough.  And to see my little guy so discouraged and frustrated with himself made it even worse.  I was angry.  Didn't God promise He wouldn't give me more than I could handle?  Well, I'm pretty sure He got me mixed up with someone else because I'm pretty sure I'm over-maxed on my stress levels.  I was hurt.  Did God not see how bad this was hurting my little boy?  Didn't He care?

I wrestled with this day in and day out, trying desperately to hold on to my head knowledge that HE really did care.  That HE really did love both Kai and myself.  But somehow, it felt like I couldn't get it.  It was affecting my other kids BIG time too.  Didn't God see that?  If He could put the billions of stars in the sky every night and call them out each by name, why couldn't He just say the word and take away the pain from my little boy?  Why not take it from my other 3 kids who were watching from the outside and hurting so bad in each of their own ways on the inside?

So Sunday night, as I sat alone at my computer checking e-mails after my kids finally crashed for the night, I opened a message from my dear Aunt.  She's walked a tough road herself, and is facing a painfully tough time right now as well.  She sent me a link to a message that she had listened to earlier that day, and had spoke profoundly to her soul, and she hoped it would encourage me as well.  So since I haven't been sleeping at all lately, and was alone in the quiet and dark, I clicked the link on and figured I'd listen while I kept playing online.  Little did I know that God had that podcast on there for me.  If you're facing some tough stuff, I challenge you to listen... it's pretty awesome.  It's by Eric Sandras, and he wrote the book called "When the Sky is Falling".  If you want to listen, the link is http://www.themeetinghouse.com/teaching/archives/2013/when-the-sky-is-falling/
It was what I needed that night.  I will share The Merton Prayer at the end of this post, but on the podcast, he closes with that prayer, and as I read and re-read it, I couldn't read it and believe it, but I found myself desperately wanting to believe it.  Every word of it.  Even the part that said "I will not fear..."  And as I sat in the dark at my computer, I told God that I couldn't do this anymore.  It was too tough for me to handle.  I knew that He really did have ultimate control, so I really needed Him to do something.  To show up.  To just let me know He cared and that He still loved me.  To let me know that somehow, in all of this mess and thru all of the storm, there was a purpose and a reason that I couldn't see.

Fast forward a bit until today.  Wednesday.  Well, let's backtrack a bit... to over a year ago.  Our pediatrician, who I LOVE, and has walked this mystery road with all of my kids and I since the very beginning, had told me well over a year ago about this Holistic Specialist that she really felt I should see with Kai.  See, for those of you who know me, you know that I'm ALL about some natural remedies, natural and healthy eating, and homeopathic treatments.  Well, Dr. Haynes knows this about me too, and she said she just knew I would love this girl.  That was a year ago.  I resisted, and never called.  In January, I had gone in for a consult with Dr. Haynes.  This time, I was in tears.  Having just gotten our "diagnosis" for Kai, I was a mess.  I was trying to wrap my head around it all, and she was trying to help me in the best way she could, even though neither of us knew much of anything about the new diagnosis.  Yet again, she recommended that I go to see "this girl".  She continued by saying she could see my faith in all of this over the past 4 years, and she knew that without my faith in a God who had it under control, she was certain I couldn't have made it this far in our journey.  She asked me to at least contact the holistic specialist to see what I thought.  So I promised I would.  And that afternoon, I e-mailed Laura Bowen to see what she had to say.  She offered to see Kai as soon as she could fit him in.  And she told me she only charged $80 for the visit, which I should plan on lasting 2 hours.  Something in me said to go ahead and set the appointment, so I did.  After all, most of Kai's doctors charge $400+ PER hour, not to mention whatever they charge for any tests they run... so for $80 for 2 hrs?!  That seemed too good to be true.

So back to today... (sorry, I'm all over the map!)... today was my appointment with Laura Bowen.  She's a certified Holistic Specialist.  And although I'm all into holistic treatments, I'm also all for doctor's that have medications and information that uses modern medicine as well, and I feel that there's a time and place for everything, and given Kai's struggles for SOOO many years, I have to be honest, I was very skeptical going into our appointment today.  She works out of her home, so we drove out to her house, about 30 minutes from our home.  Kai and I walked in together.  She immediately greeted us with a warm hello, and showed Kai some books of her kids that he could read while she gave me a few papers to fill out.  They were really different than any other medical paperwork I've ever filled out.  The first one was a disclaimer that I had to sign.  It stated that she believed that we as humans were created by God as unique individuals, made as a whole, not evolved over time.  God created us from dust, not just into parts, but into a whole person.  WOW.  I'm pretty sure my eyes were saucers before I even finished reading the rest of the Bible verses she had on that disclaimer.  I've NEVER walked into an office and had a doctor offer a single verse from the Bible to me, not to mention her whole practice based on it!  The second page was just Kai's basic contact info, and the final was any medications he's currently on as well as major concerns I was having with him.  It only took about 5 minutes to fill out, and when I was finished, she gathered the papers from me, and then proceeded  to give me a copy of her mission statement (which I wish I could type out fully for you as it's THAT amazing!).  Then... we began.

Laura started sharing a bit about her practice, and then stopped herself and asked me if I minded if she pray over our session together.  I was totally taken off guard!  I mean really... how many times have you been to the doctor, and they ask you if they can pray over your appointment before you get started??!  I think I mumbled a startled "yes", and she closed her eyes and began to pray.  She prayed so beautifully.  Just like she was starting back up a conversation with her friend.  Then she paused and was silent, and then looked at me and said "Heather, I feel like God's laying on my heart some things He wants you to know if you don't mind me telling you?!"  I think I mumbled another stunned "sure", and then it was silent again.  She then continued to speak to me what she felt God was laying on her heart for me.  She didn't know me from Adam.  She knows nothing about me.  She knows nothing of my struggle or my past few weeks especially of walking thru hell.  She knew nothing.  Yet the words she spoke to me that she felt God laying on her heart HAD to be nothing short of words from God for me.  I wish I could recite back to you all of those words.  I wish I had hit "record" on my phone to keep hearing them over and over again today.  But I can't remember a lot of them, only that I felt the tears begin to fall and found myself weeping there in the office of a woman I don't even know and had only met 15 minutes earlier.  And I do remember she kept saying this in her words that God had given her... "I love you Heather.  I have you in my hands.  I've always had you in my hands, even before you were formed in your mother's womb.  And I have Kai in my hands too.  I love you.  And right now, as the storms are raging and the winds are blowing, look up.  I love you.  I haven't let you go..."  I wish so much I could remember the rest.  It was for me.  It was simple truths that I know in my head, but just struggle with in my heart sometimes.  And today, I needed that reminder.  When she finished praying, I felt like I could just pay her and leave :)  but I didn't.  We stayed... for another 3 full hours!

I won't bore you with all the details of the next 3 hours, as I've already rambled long enough, but she was incredible.  She looked at Kai as a whole, from scratch, not just to treat his symptoms, but to discover the first causes of his physical issues.  And in 3 hours, she was able to tell me more than any doctor in 4 years could tell me, and Kai didn't even have to have a single needle poke or blood draw! She is starting him on a VERY large amount of supplements, as well as having us start a VERY strict "diet" plan.  I say the word "diet" loosely, because I hate that word as it's got such a negative connotation.  It's going to be more of an eating plan to completely detox and flush his body so that we can rebuild and try to foster a healthy internal system where his central nervous system and organs and muscles can function properly together.  Thankfully, he's a kid with an incredible attitude towards taking supplements, and doesn't complain a bit.  Tonight, as he chugged down his first solution of Colloidal Silver, and then baking soda water, and then 4 other supplements that are his dinner routine, he made a face and then as my other 3 kids stood watching him (with looks of total disgust!), he finishes and cringes and then smiles and says "these are to make my muscles work better since I'm a lot more wiggly than you are!"  Then he headed off to take his "therapeutic bath" in his special solution ... water, epsom salt, baking soda, and borax!  Yep... sounds crazy I know, but it's a therapeutic detox, and incredible!

So... that's the nutshell.  I will be ordering the 18 other supplements that he is going to be taking tonight, and those will be in within the week, and then we will begin our new routine of these new "things".  Do I think it'll cure Kai?  No.  Maybe I have a lack of faith in that, but I can't honestly say I think it'll cure him.  But I DO think it will help.  And I'm willing to do ANYTHING to help him.  And to me, it makes sense to stop looking at just the individual parts of Kai's symptoms, and to start looking at the whole of his body and the causes behind his physical struggles rather than just addressing the symptoms.  So we'll see... call me crazy, but today, I'm finding peace in the middle of the crashing waves.  HE's got this.  And HE's never let me go.

The Merton Prayer

MY LORD GOD, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore I will trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

• Thomas Merton, “Thoughts in Solitude”

*For those wanting Laura Bowen's info (just tell her I sent you!): 

Christian Holistic Care, LLC., 919-280-8437, christianholisticcare@gmail.com

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.

an uphill climb

February 9, 2013

So as I sit and write this, it's pitch dark, WAY too early in the morning, but I'm enjoying the silence since I can't sleep and going to drink a cup of coffee and update my blog instead :)
It's been a WILD past few weeks.  Full of specialists, meetings, paperwork, therapies, insurance fights... the list goes on but I won't complain because I'm thankful I've been able to get it all done and even mix in a bit of fun with the kids while at it!  So since my brain isn't fully awake yet, I just wanted to give a quick update as SO many of you friends and family have prayed, written me notes, texts, e-mails, called, made meals, and watched my kids...and I've totally dropped the ball on writing thank you's and giving updates in all the chaos.  So I'll condense it and give a snapshot version of life the past little bit...
A few weeks ago, I met with Kai's school team (twice actually) to begin the fight (again) for an IEP that would allow additional accommodations for him at school, as well as would hopefully begin to provide at least 1 therapy a week for him at school to minimize the amount of therapies I had to take him to outside of school (drs were wanting 3 per wk per therapy... PT, OT and Speech).  The first meeting was to update his 504 plan with his new diagnosis... second meeting was even bigger, and with a whole team to begin the fight for the IEP.  I honestly don't know how to say the meetings went, as they now technically have 90 days to do their own evaluations, read additional drs documentations on Kai, and make a decision... so I'm just waiting... again (I told you I've gotten good at that!).
The following week, I spent a day with Kai at a Duke Pediatric Child Development Specialist.  That's a fancy way of saying a doctor who knows how to help write ways to adapt to best help your child, and they also know the school system ins and outs to be able to help fight the schools for the IEP, as well as all the necessary parts of the IEP for your child.  This dr was fantastic, and is working right now on using all the current evals from Kai's therapists, as well as the school's own testing, to write a letter of insistence on why Kai needs an IEP asap, as well as helping lay out the specific things that will best help him function in the classroom at his maximum potential!  I will be meeting with her in another 2 weeks to go over that letter, and finalize all the details with her before I present the fight to the school.
Mix in there some therapies, time for playdates and pool fun (since my kids were all tracked out!), TaeKwonDo testing (and I have to pause here to just brag a little on my little fighter!  For those who don't know, Taekwondo is a martial art that requires a lot of discipline, power, and skills.  It's a fun family thing we started doing together over a year and a half ago, and Kai loves it.  It requires 10x the amount of work for him to do just 1 stance as it does the rest of us because his little body just doesn't stand still, but he fights, and he does his best!  And he has an amazing big sister who has taken him under her wing at TKD and loves to help encourage him, not to mention the incredible group of instructors who lead it and have been instrumental in Kai's progress and success too!  A HUGE blessing!  And so after 3+ hours of testing a week ago, my little man passed and graduated to his Orange Belt!!), and loads of other doctors appointments for my other 3 kids who were also tracked out and needing some TLC :)

So...the week ended last week with a VERY long call from a specialist at UCLA who is one of the lead researchers in the world for AOA2 (that's the short form of Kai's diagnosis!).  He was awesome.  He had spent the week reviewing all Kai's medical records, and he wanted to talk more.  I spent well over an hour on the phone with him, and he got lots more info, and had lots more questions for me.  The short version of that call is that he wants to see Kai at UCLA as soon as possible.  We are currently scheduled to see a specialist at Johns Hopkins later in May, but he wants me to bring Kai out to see him if possible before May so that he can do his own testing and evaluations, and help coordinate care with our specialists at Duke and Johns Hopkins.  The kicker is that he is seriously questioning the diagnosis.  IF indeed Kai has this, he will be THE youngest case ever documented.  There's quite a few things that are raising red flags for him in the diagnosis with Kai, but unfortunately, there is no one specific test that says yes or no you have or do not have this disease.  It's just an accumulation of lots of tests, symptoms, etc... and then they put the label on.  He has his doubts, as he currently sees 12 patients from all around the US with AOA2, and said there's just certain things (I'll spare you the details because they're pretty specific) that don't match up... but then there's certain things that match perfectly, thus raising the question of is it or is it not AOA2?!  So... currently I'm working on the plan to get to UCLA either in late March or sometime in April.  There's LOTS of details involved in that planning process, so I've been working endlessly on that, and hopefully will know more details of the dates by the end of next week.  I've been blessed with some incredible friends though... helping with airline tickets, calling their friends in Cali to see if we can have a place to stay, offering to help watch my other 3 kiddos, etc... it wouldn't be possible without them!  So I'm eternally grateful!
So where does that leave me...
On an uphill climb.  I was just beginning to process actually having a diagnosis, and walking forward with what that all meant for us (if you're curious, you can google Ataxia with Oculomotor Apraxia Type 2... you 'll see a snipit of the LOADS of information I've been trying to digest!).  And now another question mark?!  Back to unknowns?  So yes... I do feel UCLA is critical (some have asked me that considering the expense and time it will take).  I have to do this for Kai.  And I have to do this for me.  I need to know whether or not this is what we're fighting.  Because if it is, I need to be able to walk forward with it.  But if it's not, I need to go back to base camp and begin the fight for a diagnosis all over again so that I can figure out how I can best help my little guy!
I'll keep you posted...
Monday, we head to another new specialist at Duke who will be working on the neuro-muscular vision piece of this disease (if you read about AOA2, you'll see 50% of the patients have a neuro-muscular vision struggle with it that's pretty serious).  We're not sure if Kai has this, but Monday should help give some clarity to that, at least for the time being.  We'll see...
It's a 1 day at a time... 1 foot in front of the other, journey.
And as you can tell (5am now).... I'm pretty sleepless processing it all :/
But thank you for your prayers and encouragement of every form!  Seriously, I cannot say thank you enough.  You have been my lifeline as I hold on to threads of hope.  As my amazing daddy messaged me last week, I don't have to keep holding on, because I can know that even when I let go, HE's still there with open arms to catch my fall (or in my case... meltdown!).  That's hope.  Somehow, in the middle of this stormy mountain climb, HE's got it under control.

In the Kiln

January 23, 2012

As I sit down to write this, I feel I should probably warn you again that I don't believe in living behind blinders anymore, so I'm honest.  I'm doing my best to just be real.  To let you in behind the scenes in our journey.  So if that offends you and you prefer to just see what you see on the outside, please feel free to close this tab and not read further.  Trust me, no judgement from me!

Have you ever looked at a piece of pottery and been awe struck at it's beauty?  The intricate ways the piece flows.  The uniqueness of each and every piece and how no two hand crafted pieces are ever exactly alike.  Back in my younger days, I fell in love with pottery.  I had this amazing teacher in high school, Mr. Fender, who had a passion for pottery, and was incredibly talented.  He taught me to throw cups, vases, teapots, plates... you name it, he could do it and had a skill like none other.  I was never an expert by any means, but I sure loved it.  It would fascinate me how this dirty, messy, lump of clay that I would grab from my clay bag, would be thrown on the wheel and then pressed and pulled, smashed and drawn up, over and over again as the wheel spun around and around at a constant speed, making sure to get all the air bubbles out.

  Slowly, after some long and pain staking hours of work, a masterpiece of art would begin to take form.  After the piece dries fully, the artist can glaze the piece.  The glaze paints on and looks drab and dark and boring.  But then put it in the kiln to be fired at incredibly high temperatures until it is finished.  When you open the kiln to take out the finished masterpiece, it's breathtaking.  That drab and dull piece is vibrant and full of color.  It is truly a work of art!
So in all that pottery garble... I wish I could just show you the masterpiece.  The work of art.  The finished piece.  But unfortunately, I can't.  I'm in that wet and slimy lump of clay phase.  So that's what you'll see... the dirty, messy me today.  And I'm holding on to the promise that HE makes beauty from our ashes (or in my case, my lump of clay!).

So if you haven't totally checked out yet, and you still want an update on this lump of clay :) here's the latest...
Last week was a whirlwind.  It started with a doctor's appt where I was handed a GIANT stack of papers, and told to research doctors, contact a list of at least a dozen fountations, apply for grants and medical assistance for the medical expenses we already have as well as the ones coming, add Kai's name to at least a half a dozen "ataxia registries", and then oh, by the way, read these articles and mark your calendar for these additional half a dozen appointments with new specialists (which also means filling out a novel of paperwork for each additional new specialist, not to mention the gigantic piles of paperwork needed to file for the financial assistance parts!).  Throw in there 2 appointments with 2 different teams from the school system here to request (yet again... the 3rd year in a row now!  but this time armed with an actual diagnosis!) an IEP for my little fighter.  So my deepest apologies to those of you who messaged or texted me or called me and I didn't respond!  I have fantastic intentions of getting caught up... one day :)  I had an inbox flooded with questions about our IEP meeting though, so I wanted to give a quick update (and again... here's a warning that I keep it real so please don't be offended, and I'll go ahead an apologize in advance if you are offended).  Last Thursday, I met with a team from Kai's school to add on an "addendum" to his current 504 plan.  For those of you who aren't familiar, a 504 plan basically allows for a few modifications in the classroom, but you have to re-apply for this each year and hope that the next teacher you get is as on-board as the current one in helping get your child the things they need.  It's also very limited in what it can allow for modifications, so with this plan, Kai couldn't get any sort of therapy (physical, occupational, or speech) at school.  If you've read my last few blogs, you know that we've been asked to have these three times per week EACH.  That's a lot for an only child, not to mention that fact I have 3 other children as well.  So having this help at school would be HUGE.  I'll spare you the details, but the team Thursday was fantastic, and made all the adjustments we needed to at this time for Kai.  Then, Friday came, and that was an even bigger meeting with more higher ups from the school to file the request for the IEP.  IF he were given the IEP, it would stay with him until he graduates from high school, no matter what school he's in.  That would take one big fight off my platter.  So I'm fighting HARD for it now, again.  The meeting went about an hour and a half, then the school power went out and somehow, ALL the information they had just entered over the past hour and a half was erased, so we had to start over.  Awesomeness.  That was the lump of clay being drawn up, getting the air out of the clay, and then smashing it back down.  So we started back at the top, re-entering it all.  Thankfully, one of the higher ups had a fantastic memory and could remember almost verbatim everything we had entered.  The meeting ended with me having to fill out waivers and sign over permissions for the school to contact a handful of Kai's leading specialists to discuss his case and whether or not they felt there was really a need for the IEP.  Then, I was given forms I have to take to his doctors and have them fill out and send back to the school regarding his condition.  And I was told I have to wait... 90 days to be exact.  Yep.  90 days is what they have to read, call doctors, do their own evaluations of my poor child who has been examined by more doctors than you and I have probably seen in our entire life put together.  That part just burns me up.  I fully understand there's just "procedures" that have to be done, and checklists that have to be marked on their part.  But I also have plenty of friends who have kids with their own struggles that are just WAY more common so the school has granted IEP's in 3 weeks or less.  So my struggle is not with my friend's kids, but more with "the system" that is going to waste yet another 3 months of my child's time.  But again... I will just wait.  You'd think I'd be used to that part by now.

Ok, so I'm going to backtrack a tiny bit, to earlier last week.  Remember all that paperwork and registries and all... well, I got right to work on that.  I spent over 5 hours Monday night reading, researching, e-mailing specialists, etc.  One of the registries I was asked to join was one for an organization called the NAF... National Ataxia Foundation.  I e-mailed the head coordinator and told her a 3 sentence version of Kai's story and asked what I should do next to get on the registry.  She immediately messaged me back with the contact info of a lady in California who she said I should contact.  She said the woman had a child with AOA2 (Kai's form of ataxia).  I'm not a very good phone person most of the time, so I e-mailed the lady right away, explained who I was and why I had her info, and asked her if she had any time to send me some of the wisdom she had learned in dealing with her child with AOA2.  Within 2 hours, my phone rang and it was this sweet mom in California, who spent the next hour telling me her story of her 3, yes THREE, boys with AOA2 (she has 1 daughter who is not a carrier), and how she did it, the lessons she'd learned, doctors names who I should contact... and as you can imagine, I was a sponge.  I was SO full of questions, but I didn't know where to even start so I just listened.  And after I hung up that phone, I just cried.  More like melted down.  It's incredibly overwhelming to hear that your child has an incredibly rare disease, that is made even MORE rare by the fact that he's only 8 years old and other documented cases begin as a teenage or early adult onset, not to mention the fact that there's only 15 documented cases of families with this diagnosis so nobody really knows much of anything about it.  Add to that hearing what we can expect life to become (wheelchair bound within a few years), as well as the reality that there is a 60-75% chance that at least 1 if not all 3 of our other kids also have this disease and just haven't shown signs yet... it's a bittersweet thing to know.  Overwhelmed doesn't begin to describe it.  Yes, I know, I have a God on my side who loves my child more than I could ever even dream of loving him.  Yes, I know, HE can heal if He so chooses.  Trust me, I've read all of those verses of healing and peace more in the past few weeks than ever before in my life.  Call me weak in faith, but right now, I don't know how to hold on.  I just know I have to hold on.  I'm desperately hanging on by a last finger nail, hoping and praying that soon, VERY soon, I can see the beautiful piece of pottery that was sculpted and put into the kiln by The Master Artist.  Because right now I'm in the fire.  I find myself watching my sweet boy (we are in year-round schools, and right now my kids are all tracked out for 3 weeks, so I get to spend 24-7 with them!) day in and day out fight just to stay standing.  And I find the tears falling yet again... both with pride and admiration at the incredible fight and determination that he has to adapt and modify just to keep upright, and also with pain as my heart breaks for my sweet little boy who was handed a pretty shitty hand if I do say so myself.  I would give anything to take the hand he was dealt and face it myself.
Yet he never complains about it.  He just keeps fighting.  He falls, but he gets back up and tries again.
And I have to hold on to the fact that God doesn't make mistakes.  He is making and molding Kai's story into a beautiful piece of art too.  Somehow and in some way, God is going to use my precious son's story to touch lives.
And the kiln will be worth it.  It has to be.

So until then... I will hang on in the fire.

What's next?  I don't know.  We are waiting on a call back from Johns Hopkins to let us know when we will be going there to see the head of the neuro-muscular dept, as well as the head of the ataxia clinic there.  We have also been contacted by UCLA who is very interested in Kai's case and is working to figure out how they can also be a help and whether it would be beneficial for Kai to be seen by their ataxia researchers (who are the ones we got connected to thru the mom I got to speak with out in Cali!).  But again... it's a "hurry up and wait".  And until then, we have our schedule full of new specialists here at Duke and the MD clinic here.  So thru the fire we will walk...

My pastor gave us these verses on Sunday, and I've been holding on to them since:
"Fear not, stand firm, and see the salvation of the Lord, which he will work for you today... the Lord will fight for you, and you have only to be silent."  Exodus 14:13-14
I'm thankful He says to be silent... because right now, in the fire, I don't know how to pray.  I just know I have to hang on.

Kalia's (10) been singing this song a lot lately.  I don't think she really understands all of what we're facing right now, but oh that I could grasp the faith of my beautiful daughter as she sings this...
http://www.youtube.com/watch?v=zlA5IDnpGhc
"Our God is greater
Our God is stronger
God you are higher than any other
Our God is healer
Awesome in power
Our God.."