​What can I say, what a whirlwind it has been – not only that another year has passed, making it now 11 years post-transplant - but we as a family had a lot of changes in this past year…  As I mentioned in last year’s post, we closed our business due to COVID and my brother’s family had already moved out of CA for Colorado.  With our prospects open to whatever this unknown was, Amber and I decided to pick up and move to South Dakota.  As random as that was, which it still is, we decided to live in the footsteps of my grandma – who was born and raised about 10 miles North of where we now live. 

Our life has changed immensely in the past 9+ months.  For starters, our kids are finally back in school, which has been and was the most difficult thing to witness throughout the “Covid Lockdowns” in CA.  Although we are the kid’s parents, I didn’t go to school to be an educator, let alone a therapist for the harm that has come from all this chaos thrusted upon us, especially someone like Dylan.  But enough about CA living, as we’re no longer in that environment and have started over.  Which brings me to another point – yes it’s different here, yes it’s COLD, yes it can be overwhelming starting over in our 40’s and kids at 10 and 16 years old.  Now having to make new friends and be that “new kid” in school, and in addition, Dylan having to repeat his sophomore year because Zoom isn’t a substitute for in person learning.  He and his sister are now attending a school with only 600 kids vs. thousands, it’s a big difference.  But not financially making ends meet and continuing the unhealthy environment in CA, we simply couldn't make it make sense anymore.  We felt compelled that a drastic change was necessary for our family.

So, as of April 23, 2021, we left the state of CA, never looked back, and started our journey to South Dakota in 2 separate cars, with 2 kids, a dog, and a cat.  It’s been an interesting journey, one that we never would have ever dreamed about had the world around us (and so many others) hadn’t come crashing down.  They say drastic times call for drastic measures; I’m hopeful that in the long run this was the best decision we could have made given our circumstances at the time.  I know everything could always be better or worse, but this is something that we grew sick inside, especially given Dylan’s complex medical situation that forever needs attention.  I can’t even articulate well enough the pros and cons we went through ensuring that we not only have adequate care but superior care for Dylan – we didn’t make it this far in life being lackadaisy about him and his medical team that cared for him.

After getting grounded with our new life, kids somewhat settled in school, both Amber and I with new jobs – Dylan had a setback.  Dylan back in October ended up inpatient for ascending cholangitis…which was extremely difficult to deal with in a new place, new Dr’s, and new ways of doing things that we hadn’t navigated before in this new state.  He is now also due to have a liver biopsy here this month too.  Another hurdle outside of CA, is the medical system.  Almost everywhere else, the medical system has Coinsurance (percentage you pay for the bill) and although we have the best plan and lowest deductible offered, our portion of the hospital bill for 2 days was $4,300+ (this is on-top of the $1,200 monthly premium).  But this isn’t isolated to SD, it’s basically any other state, as SD only has about 900k residents…the cost sharing just isn’t the same among the population as a much larger state.  This was another hurdle we knew coming here, its something we researched before even looking at places to live.  The truth of the matter is, just like before we decided to have another child (Tegan), we looked at how much she would cost per month for insurance, and we came to the realization that it’s just no way to live.  So, we decided, just like with her, we will just have to make it work – for better or worse, I must believe we will continue to do what it takes for Dylan to thrive.

As we continue down this path to our “new beginnings”, we still feel confident that no matter what life throws at Dylan, he will adapt and overcome.  Although I know he likely hates what we’ve done to him here recently with the move – I think we’re still surrounded and guided by a love far bigger then us and for something better in the long run.  Time will tell if I made a bad decision for my family but I have faith that given ample time, an open heart and mind, all good things come to those who embrace it.
 
Even if we aren’t close by those that we had before - we sure thank you for all your support through the years.  Here’s to another one and ideally with less hurdles than these past - onward and upward!

​-Noah

​I always say, “how has another year already come and gone” but with that being said, we all know this past year has been exceptionally odd, hard, and scary - especially for those vulnerable people like Dylan - who are the immunosuppressed individuals of the population.  Although we have not been petrified of the “what if Dylan got Covid-19”, we've certainly been mindful of keeping him away from unnecessary grocery store trips, being around folks we do not know, and just paying extra attention to our environmental surroundings.

This past year truly has been exceptionally hard on all levels though.  Dylan (and Tegan) literally have been locked up for 11 months.  For those that do not recall, we live in California and it has been a draconian unbearable experience to say the least.  As adults, both Amber and myself lost our jobs – and my business of 17 years – add in to this stress the kids who have lost all their friends and close connections, as well as school interaction(s)…it is beyond a travesty what has transpired.  Not to get too political on our son’s blog but honestly the worst part about what has been done here is the complete unapologetic ruin of people’s lives for the sake of “saving others lives”, or so they say, but costing your own existence at the same time.  Although we care deeply about others, we also still must put food on the table, pay for life saving meds, outrageous insurance premiums, and when you have had the rug pulled out from under you and you are left to fend for yourself and what little crumbs the .gov says we can have…I have no means but to feel jaded by the way this has all been handled.  It is not right, it is not fair, and lives are forever changed.  In addition, my brother’s family, whom me and him had our 17 yearlong business, working side by side together, have already picked up and moved out of California.  So, the kids have also lost their cousins as well.  And soon enough, our family will be forced to move, as we cannot continue to make ends meet here anymore.  It is an incredibly stressful time, and we feel the weight of the situation on our family.  I honestly fear for the youth and the negative outcomes that will result from this failed experiment they have implemented on us all.
​
But let me get back to how this affects these kids, both Dylan and Tegan have anxiety issues far greater than they ever had before.  Although this roller coaster seems to have no end in sight, I wonder what it even looks like once it is “over” and whatever that even means, as I just do not see them magically going back to business as usual, packing Dr. offices, kids playing like normal at school, etc.  Dylan has been feeling awful for some time and most recently has rapidly lost over 20 lbs of weight (he is already skinny and doesn't/didn't even have this kind of weight to lose).  Just the other day, I had to take him to the hospital for labs, EKG, and chest x-ray as Dylan has been having a really hard time (this is a severe understatement) with things as of lately.  The hospital/Dr. offices are basically shutdown, 1 entrance in and out, lines are hours long, and they have closed most all the services like treatment rooms, drop-in appointments, even most the labs are all shuttered.  Meanwhile doing critical face-to-face, hands on appointments via Zoom.  This is just asinine if you ask me – if we are in the midst of a health crisis, why on earth are they limiting services – it should be expanded.  Dylan needs extra support, which we feel is a culmination of everything that has transpired not only from his unique life early on but especially what has transpired over the course of this past year.  This forced Covid isolation is breeding unhealthy antisocial behavior, extreme anxiety, which in turn is having major mental stability repercussions...it's sad to witness, it's sad to not get the support needed, it's sad that there is a large group of people whom enjoy what is transpiring in this country.

As we work through this overwhelmingly stressful time, seek to get more support, and hopefully turn the page for better days ahead – we cannot help but be immensely grateful that today marks a decade, 10 years since Dylan’s rebirth on life.  We are so proud of the young man he is, the strength he continues to muster throughout, and what great things he will accomplish over the next decade.  As always, to those of you who have supported us, albeit lending an ear, financially, or the dedicated team who oversees Dylan; we could not be here without you.  So many take the smallest gestures for granted, just know that we never have and/or do.  Thank you for your love and support.
​
​-Noah

Another year has passed, which is another year we give thanks for this day.  Now don't get me wrong, Dylan is a 14 year old teenager, a freshman in high school - we like so many other parents - deal with the "normal" childhood/teenager things but with that being said; we wouldn't want it any other way, as the alternative is unimaginable.

This past year has been one of the most challenging years of our lives personally and emotionally.  We moved our family into my elderly grandma's house to give her a better life.  We were forced into a construction zone fixing a dilapidated house, Dylan and Tegan sharing a bedroom with bunk beds none-the-less, new schools, new family roles, and left a familiar life to better another's (Dylan and Tegan's great-grandma), the process with Hospice, and dealing with the loss of an amazing person.  This past year has been one that I will never forget and more importantly it drives home the importance of family (which I include my closest friends) and how in our darkest days - it's the only thing that matters in the end.

The gravity of what Dylan has been through and has overcome to this point can never be understated.  Like all the years before it, we're so blessed to continue on this journey and always feel so thankful...all too often kids whom grow up like him will struggle, turn inward, and face serious depression.  We will never be able to accurately express to Dylan how strong and amazing he is - for it's his relentless perseverance that drives his success, not us.

-Noah

Its that time of year again...which is always a great reminder for us to give thanks and be appreciative - although not everything is "perfect", we know all to well how much worse things can always be. 

I vividly recall when Dylan was born, before we knew anything was wrong, just how stressed I felt.  I used to say to folks that "nobody gave me a book on how to be a parent and I'm just doing the best I can", I changed this to "nobody gave me a book on how to raise a chronically ill child", as it became more fitting.  As time has passed and with all the up's and down's in this life - one thing has remained constant and that's Dylan's resolve.  He has always been a trooper through it all, he has never given up, he has never refused to continue marching forward, and he has remained steadfast on his pursuit of being just another "normal kid".  

Dylan over the course of the next month or so will be redoing some testing at Stanford, which may lead to more testing (depending on results).  Although its frustrating we didn't get the answers or clarity we were hoping for with the last test a few months back, we're grateful there was not further negative news based on what they could see from those results. 

Often its during the most difficult times that we reflect just how much it all means to be offered or lent a helping hand, to get a few words of encouragement, and/or those whom truly show there true colors of who they are.  But through that, we're always reminding ourselves that without the doctors who cared for, operated on, and got Dylan to this point - that this yearly anniversary wouldn't be possible.  They say "it takes an army to raise a child" but what they don't mention is what it takes to raise a chronically ill child from birth. I know parenting is hard for most everyone, we are no exception to this but raising a child with extra ordinary circumstances - whatever that may be - does take a toll on everyone involved but we feel so fortunate/blessed for the love and support of those whom have gone out of their way for Dylan and us.

A few quotes that seemed very fitting...

"Your living is determined not so much by what life brings to you as by the attitude you bring to life, not so much by what happens to you as by the way your mind looks at what happens."
-Khalil Gibran

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
-Edwin Hubbell Chapin


​Happy 8 year Transplant Anniversary to Dylan, to us, this date is forever in his honor!


-Noah

Clearly its been a year since I've done an update, its not for lack of wanting to - seems in the past I've only done trying posts, when we are battling this or that and I wanted to do an uplifting post and a progress of where things were at but just never actually got around to finishing it and posting it up.  Which I regret but part of it or likely most of it - I'm sure - is I didn't want to jinx ourselves and the other part was just focusing on the here and now.  I promise I will do more updates in the future, as I feel its important to reflect on the hard times and the easier times. 

Over the last year, lots has transpired but mainly just daily living and doing our best to get by and be as productive with our time as possible.  Dylan turned 12 years old (about to be 13 in June, which is just hard to believe that we're going to have a teenager).  His sister turned 6 but thinks she's going on 15 - ugh but that's a whole other story, ha ha.

Dylan got to attend transplant camp again this past year and actually said he had "fun" and even made a mention if someday he'll be able to be a counselor to kids like him.  Not sure if anyone recalls but this is a big step, him being away from us and actually stating he had a good time - yes he still missed us but I think he had less anxiety and more fun this go around. 

Christmas was good to him, he got what he wanted and begged for.  We got him the new Xbox One S.  His last game system he got was while he was in the hospital recovering after transplant, of which it was from a group of friends that bought him an Xbox 360...so this was a big deal, big for us as it was expensive and big accomplishment that he's come this far and had outgrew the old generation game system.  It was bittersweet to be honest. In addition, being it was the holiday season and Dylan was in good health, we took the family to "A Christmas Story" musical in San Francisco, it was just nice to get out and be as a family and enjoy this time of year and most importantly not be in a hospital or sick for once.  

Winter is typically brutal on Dylan, between asthma and sickness...but honestly this past year was the best year Dylan had ever had in regards to sickness and being hospitalized.  Although he had his bouts like anyone else, it was just that - like anyone else.  I gauge how he did by how much money we spend on medical co-pays and last year was the least out of pocket we have ever spent in 12 years...I can only hope this past year's trend continues.  As I write this, his sister just got over 4 days of that nasty flu that's going around and Dylan to date hasn't gotten it and we're hoping it skips him all together.  Its crazy how the normal things like colds and the flu are what keep us regimented and always on high alert.  Being immunosuppressed requires this though, you can never let your guard fully down. 

2 days ago Dylan was at Stanford for his clinic checkup appointment.  His labs were spot on and being that they've been so stable over the course of the last 6 months, they've dropped his Actigal medication completely (which he has been on this med for 12 years of his life) and they've moved his lab draws from every 4-6 weeks to every 3 months - also moved his in office visit at Stanford to once yearly!  This is a huge milestone and its one we welcome for him. I knew someday we would get here but when you're in the trenches and trying to dig your way out, its hard to focus on when that day will/might come.  Although Dylan will never be completely cured, med free, or out of the woods when it comes to his condition, we appreciate this pinnacle time in his life - where he's just starting to come into his own, that he has less stress associated with persistent lab draws, Dr. visits, and hospitalization. 

We have never looked to erase Dylan's past and what he has endured and overcome but we are certainly grateful for this past year and this weeks good news from his transplant team...we can only hope it continues for the foreseeable future - he deserves it, especially as today marks his 7 year Transplant Anniversary. 

-Noah

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Slideshow:
***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge.  To get more images put your cursor over the last picture shown on the right, it will scroll to more images***

It's official, Dylan has officially gone longer post-transplant vs. his pre-transplant life.  

Although he always has challenges and big swings of ups/downs, one thing we know for sure is how hard Dylan tries to always give his best shot that he knows how to give.  It's not easy, imagine being in his skin...he knows nothing other than fighting and being afraid of not only  what every normal kid faces but his is coupled with the reality of his situation that can change on a whim (I think this is probably the hardest for any of us, so unpredictable).

Today marks 6 years since we made our trek to this side of things.  I remember this day like it was yesterday, and to be honest its mind boggling to think that 6 years has already passed.  I will say that with passing time comes reflection, with reflection comes appreciation, with appreciation comes gratitude...and I feel very gracious and blessed for all we have overcome thus far and how much others have helped us be here today.  I think back often on right before this day, all the good people whom surrounded us, did fundraisers for us, offered a lending hand, or simply a prayer to keep us in good spirits.  I haven't and will never forget what everyone has done for our family.  In our time of need, business professionals, personal friends, and perfect strangers banded together around a common purpose; to see Dylan have the opportunity to live some form of normalcy.   

Its been a whirlwind, its been enlightening, its been beyond challenging, its come with good times as well as bad, but in the end....its never broken us as a family.  Today I give thanks, just having the ability to write something positive and congratulate Dylan on being on this side of life, its worth all the pain that has come before it.

-Noah

It obvious we have not posted, not even for Dylan’s 5 year transplant anniversary back in February.  I suppose it was on purpose, like so many times before.  It’s ironic that when things are going decent for the moment, how you’ll do anything to keep that trend…even to the point of not doing something so you don’t “jinx it”.  Sad that’s how we view things, holding on to a glimmer of imaginary or hypothetical hope that really doesn’t amount to anything; this is what we do at times and this was one of them.

So I guess we might as well just jump right into this past week(s).  We’ve spent the last 5 days in turmoil, in panic, in fear of what was to become of our upcoming Tuesday morning (day after labs were to be repeated).  Rewinding to 2 weeks ago to Dylan’s labs, they were great!  With exception of his Eosinophils (these are a disease fighting white blood cell, it’s also a marker they look at in allergic people as well), well they were at 24% (you and me typically run 0-2%).  This past Thursday saw Dylan at Stanford for a routine check-up, they opted to do labs because he was there and just to be on the safe side.

Friday morning I got a call from a transplant coordinator (our regular one was out) that Dylan’s labs were drastically changed/high (100%’s over what they were for most of them).  They wanted him immediately setup for a liver biopsy, repeat labs at the hospital the following day and to prepare for biopsy on Monday.  After having a few conversations they also wanted to add in an upper Endoscopy at the same time (2 different doctors to coordinate for this) and now they needed to move the appointment to Wednesday.  Yes, this is a lot to take in…yes, it’s like being kicked in the face and then adding salt into the wound.  But we don’t get the option of just complaining and groveling in our own misery, we have to pick ourselves up by our boot straps and focus on what needs to be done for Dylan.  The kicker was the timing, as Dylan is graduating from 5th grade on that Thursday and would of missed his elementary school graduation, which he’s also transferring school districts and leaving behind his friends…it would be a big deal, not to mention he’s already missed so many things in his life.

I had expressed to the coordinator that this has become a sporadic but all too common theme with the no warning/roller coaster labs out of nowhere.  Literally a week prior, the labs were spot on perfect (again except the Eosinophils) and at this last Stanford visit on Thursday had finally advised we could go 6 months between visits and now here we are, honestly not even 24 hrs later and it’s a complete reversal.  In talking more with her, I mentioned that repeating labs the next day would not be advised, it will only show the same and I pressed her to allow us to wait until Monday to repeat them, as I know from the past and numbers like he has that no change can be had in less than 24 hrs based on where he was at.  I also mentioned we (Amber and I) really feel that after 3 biopsy’s, countless years of steroids to treat the rejection that has never been found, that we are back talking about taking these same steps again and I just can’t wrap my head around this.  That I feel we need to all take a step back and focus on Dylan, not statistics of what is normal with others but just Dylan.  I wanted to talk about the correlation between his always high Eosinophils and the prospect of the Interleukin-5 (IL-5) IVIG treatment that we have been waiting on, counting on, holding onto to hope for nearly 1.5 years now…we really feel that this is intertwined, if not 100% completely what’s causing all this chaos.  Although his transplant and anti-rejection med is the cause for the issues, we want to get to a point where we can understand that this new life, one that started on 02.07.2011, and start treating the long term byproduct of where we are…ultimately we want to treat the effects of this lifelong situation. 

Our weekend was arduous, was nerve racking, it was like so many that has come over the course of darn near 11 years thus far.  Monday saw us at the lab bright and early as a family and Tegan asking why Dylan needed to get poked again and if it would hurt him.  We always tell her that its necessary in his life to ensure he is safe and healthy.  I know she doesn’t quite get it, at times I myself feel like I need a poke to wake up from this life, not that I wish it to be any other way but just for it to be easier for him.  For the remainder of Monday, Amber checked her cell phone for incoming labs no less than 100’s of times.  They wouldn’t come through until about 10pm at night.  With one eye open and the other shut, she would pause prior to clicking on each individual test, we check the least important ones first before moving onto the LFT’s (liver function tests)…1 by 1, each one was reduced and by a lot.  Although we breathed a sigh of relief, it really was to save the torment this would have had on Dylan.  Even as adults it’s hard to understand and is always emotionally charged.

The following day I spoke to the coordinator again, she was shocked (again she’s not our usual point of contact) that his labs had taken such a drastic turn; she even thanked me for pressing to hold off on labs until Monday.  I asked her to speak to Dylan’s doctor to get his input and start a dialogue with the allergy department to see if they can all come together and find a solution, hopefully start the process of moving forward for the IL-5 IVIG treatments.  She advised they would and also agreed to continue the Endoscopy process as we feel this is another item that needs to be addressed to confirm more allergy issues through Dylan’s body.   Amber and I are convinced Dylan is riddled with Eosinophils in his esophagus, stomach, organs.  Although we don’t want Dylan to have to go through another procedure, everyone feels it’s important to know more about what’s going on in his anatomy.  

We opted for the first time in our lives to not tell Dylan about all that was going on, although I think deep down he had an idea something was a bit off.  We have never done this before but after hearing him talk about his graduation day and what not, we just couldn’t bring ourselves to upset him because what if Monday labs were better and this was all called off for now?  That is what we held onto, we held onto it for the sake of him and I'm thankful we did.

As Tuesday night came to an end, we were trying to be positive and just keep moving forward…almost as if none of this had transpired over the course of the past 5 days.   While Amber was getting Dylan ready for bed and going over his school work she found this note, one might even say a poem.

We always say, it’s amazing another year has passed us by.  This year has been no exception to that as well.  Hard to believe it has been 4 years.  I wish I could say it has been trouble free but at the same time it could always be worse.

As of today we are still awaiting authorization for Dylan from the Psychology and Immunology Department at Stanford.  In addition we are still waiting further testing on Dylan for his academics in school and trying to come up with a plan that he can thrive from, as opposed to consistently falling backwards.

Dylan is currently undergoing treatment for Pneumonia, which is the 3rd time in the last 12 months.  It's a bit exhausting and troublesome that every single time he gets a cold, he ends up with Pneumonia (especially since it can cause scarring).  

To make this not dragged out and winded, what I can say is...There isn't a day that goes by that I'm not thankful, grateful for another day, or blessed to call this difficult life our own.

Our scars are reminders of our resolve as well as strength to continue to charge forward and never give up on the fight and hope for better days.

Thank you all for support and love shown to our family.

-Noah

Hard to believe its been 3 years since this day.  I remember it like it was yesterday but on the other hand it feels like a lifetime ago as well.  I want nothing more than to type this and say how great everything is but I can't.  I can't for the sake of being accurate, being honest with ourselves, and you whom diligently follow this journey with us.  

Our past year has been in some ways hell-ish.  Significant changes have taken place, lots of meds added in, and lots of uncertainty remain.  This month marks his 9th month in a fairly consistent state of liver rejection (If I recall, we've had 2-3 sets of ok labs during this time frame but was always followed by bad sets for x amount of time).  

As of yesterday, Dylan is in a state of bad labs.  The most troubling aspect of that is he's on triple immunosuppression (Prograf, Rapamune, Prednisone) and its still climbing.  This has been the never ending trend over the last 9 months but now he's on multiple drugs in an effort to combat these things...its just not working (yet anyways).  In addition, a few weeks back Dylan and Tegan got the flu (both are vaccinated), for Tegan it was 7-10 days of on/off fevers and a general miserable well being.  For Dylan, it was multiple doctor visits, multiple breathing treatments, fevers, and as if that's not enough he also got pneumonia as a secondary infection.  That is 2 years in a row that he has succumbed to this from a common cold/flu.  That's unfortunately the life of a transplant recipient....never just a simple cold or flu, never just a normal kid getting sick.

Aside from the stuff listed in previous updates and the above just mentioned, I suppose I will just keep things at that, as there isn't much reason to go on and on about things.  Amber and I are having a hard time with everything, we really just want things to be better and for things to make a turn for the best...it just seems never ending at times and I'd be lieing if I said its not hard.  It's hard watching Dylan suffer at the hands of these drugs, medical procedures, and the constant up/down of the life that comes with this.  I know things could be worse, I know we are lucky that he is still here and relatively still doing "ok" but at the same time we can't help but fear the unknown, as well as the never ending chaos that his life currently is on.

As I reflect back on this day, I will never forget our conversation when we all met with Dr. Esquivel some days prior to transplant.  He very matter of factually advised us that post-transplant life vs. pre-transplant life is very challenging and often times can be worse.  Everything from the challenges of surgery, to the meds, the side effects (cancer related stuff), to a failed liver and starting over, and/or death.  It wasn't said to intimidate or cause fear, it was said to advise on what could be.  As with anyone in this scenario, there is no option...you move forward and hope/pray that all goes well.  I feel very fortunate that Dr. E had this "real" conversation with us, that he didn't pull the doctor card and act detached, and/or sugar coat it.  He had a from one parent to another conversation about the difficulties we might face.  The only thing I feel sad about from this conversation is that these things he talked about in fact include us.  I can only blame myself for having such narrow minded hope that this wouldn't be how it is, I had such an overwhelming sense that if I could just donate my liver to Dylan; that all would be ok.  Almost as if that was my purpose in life, my reason for being born, my gift to him....sadly that was nothing more than fantasy in my head and to be honest, it's extremely hard to grasp and see the reality of all this.  Its sad, its frustrating, mostly its painful.  I'm not a religious person per-say but I have done my own bit of asking for help from whomever is listening...I feel after 8.5 years, it just may be time to realize we are on our own with this life. There isn't a day that goes by that I wouldn't sacrifice my soul to give him simply a 1% better chance to just be better off today than he was yesterday.  

I don't know what more to say at this point.  I'm grateful for today because I know others have it worse off than us but it doesn't take away "our" pain of what "we" deal with and how "this" path has been going for us.  I typically say I hope for better days to come but rather than saying that empty saying...perhaps I should just say I'm hoping we are just ready enough for the continued fight I know we face.

Thanks for keeping Dylan in your thoughts, if only for this moment...we greatly appreciate all your support.

-Noah

Today is Dylan’s 2 year Transplanniversary.  Hard to believe another year has come and gone and here we are writing about it again (which is a good thing).  Rather than do a complete breakdown of how challenging our past year was, I’d rather only go back a few weeks and give insight of how our lives are lived from day-to-day, week-to-week, month-to-month, and hopefully this time next year I will be able to just use the term from year-to-year. 

We are always brought back to reality of how fragile Dylan’s condition is.  It’s something that we never get total relief from, even on the “good days” which we call uneventful times; it’s always in the back of our mind that something can go south in a blink of an eye.  It’s not a matter of being negative or looking at the glass as half empty but rather this is reality and this is the reality of a liver transplant kid whom is on crummy immunosupression drugs.

Just 2 weeks ago Dylan was hospitalized for 4 days due to what mostly was a bunch of normal/small things that quickly turned into a bigger issue.  Our assumption is his common cold he got from school, turned into double pneumonia (around this time we had labs and they were showing signs that he was fighting a bacterial infection but the docs didn't agree and wouldn't prescribe antibiotics like we requested), which in turn ran down his system even more, which then turned into him getting the extremely contagious Noro-virus…which further dehydrated him even more and only then did they agree and start treating him for ascending cholangitis (which is a bacterial liver infection).  So 3 full days of IV antibiotics + fluids were needed to get him back on his feet, an additional day for observation to ensure he was feeling good again and finally he was released from the hospital.  At least we were out in time to enjoy our wonderful trip that was upcoming the following weekend.

Virtually 2 years ago to the week…we were in the same spot as we were this past weekend.  We were fortunate enough to have been welcomed back to The Ritz-Carlton Lake Tahoe, which is where Dylan’s Make-A-Wish trip was back in 2011 (just a week or so prior to his liver transplant). 

The Ritz-Carlton Lake Tahoe is more than 5 star amenities, more than the glitz and the glamour of a luxurious hotel…and let me tell you; those simple/subtle words do not do this place justice, its beyond fabulous in every imaginable way.  This place is an experience; from the folks at the valet whom ask you how you are, to how your drive was, to saying they’re happy you’re here.  Its crosses all boundaries of what service is all about.  When you stay at the Ritz, you’re truly welcomed like a family member and not one that is awkward like Thanksgiving dinner; it’s like your every hope/dream of what and how one should be treated.  When you’re here, you’re pampered…and not just by way of the finest decor, the softest linens, and/or the most exquisite material things but rather by way of the amazing people.  The folks that work there must truly love there jobs, its shows in there everyday dealings with people and it’s a breath of fresh air to say the least.  It’s the epitome of the human experience.  That is what makes The Ritz-Carlton what it is.

I must say being able to spend the weekend in the same spot as we left off 2 years ago, which was a place of not knowing how things would be, how they would go, or where we would even be in 2 years…it was nice to be allowed that experience albeit only have been for 2 days; I can’t thank certain folks enough who made it possible for us to be there on such a special circumstance.  It truly gives hope and a tremendous feeling of being very blessed for those folks who give a piece of themselves for the sake of others.

As always we thank you for your continued thoughts and prayers for Dylan this past year, unfortunately this past year we have seen our fair share of the hospital, turmoil, and lots of emotional days that feel like a roller coaster ride but we truly believe better days will be in Dylan’s future, its just a matter of when that shift happens and those days of heartache become fewer and far between.  We know it’s a lot for folks to read and take in and it’s ok to think to yourself that thankfully this isn't your life.  Although we don’t wish to change any aspect of our life, we certainly wouldn't wish this on anyone as well.  But at the end of the day, we feel very honored and blessed to be Dylan’s voice, to be his parents, and to be his fighter’s on his behalf.  It’s what makes our family who we are and we thank you for taking the time out of your lives to read a bit about ours.

Here’s to hoping for a less eventful 2013!

-Noah

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