Live Free

Clayton's journey has changed me so.  My insides no longer match my outsides, I've aged both in ways people can see and in ways they can't and I have seen horrors of a certain kind to fill multiple lifetimes.  The effect this has had on me was both unforeseen and unexpected.  But it is one of the best things about this journey.

You see, I reached this point of exhaustion where I stopped caring about the wrong things and just wanted to live for the right things.  

I saw this quote from Meryl Streep a while back and saved it ever since.  In many ways it describes how I feel.  I know there are some people that have a hard time grasping this concept, but living this way works for some people...for many people...and its unimaginably freeing... Not only that, living this way is possible for anyone.  It's kind of like using the good china everyday because who the hell knows if they'll have tomorrow and you love that frickin' china or doing your bucket list now because you can and why the hell not.  It's freeing.  It's realizing that that person/people in your life who is always negative and critical...they aren't necessary...even if you love them, you don't have to give them a chance to drag you into their hole.  It's realizing appearances don't matter and a hypocrite is a hypocrite no matter how they disguise themselves.  And generally speaking you are under no obligation to buy into the bullshit our society tries to feed us by the boat load.  It's breaking free of anything and everything necessary to just be and just live all of your days on this beautiful gift of a planet our amazing God has put us on and filtering out all of the crap.  We all have a choice and I choose 110% to filter out all the things/people that stress me out or bring me down and that/who are generally just toxic.  

I have ONE life and it isn't guaranteed to be long.  I choose not to waste it on that which doesn't matter.

Unbelievable...

Seriously unbelievable... I am not grasping some of our latest news.  We did an ultrasound on Clayton in August and I got the results about a week and half ago, but haven't posted because I don't know what to make of the results.  At first I wanted to be sure the new nurse who delivered the news was not somehow confused (because she has been before), so I verified with our veteran urology nurse.  Sure enough, same news and she read me the radiology report.

Somehow and I have no idea how, Clayton's kidney showed no signs of hydronephrosis (fluid on the kidney leading to decreased function) in the most recent ultrasound.  No test EVER in his life has had those results.  Seriously.  Not one single test in his entire life has ever shown his kidney without hydronephrosis.  Some tests show a little more and some a little less, but never has there been NONE.  I have not gotten to speak with the doctor yet to hear from him what this means for everything, but I will soon.  Until then, I'm just in shock.  I don't know what this means for the future of his kidney and to go from the doctors preparing to put him on the kidney transplant list last December to where we are now is CRAZY.  So this is crazy, but good crazy and despite our shock and questions, we are trying to be grateful for these turn of events and hope they are here to stay.  So THANK YOU for all of your prayers for his kidney health, they did something!
We do cancer scans in the next couple weeks and that CT will further confirm or debunk the results of the recent ultrasound.  So I am definitely going to be pacing waiting on those results.  These scans will also be his 3 year post chemo scans.  That's a milestone.
Otherwise things have been good.  We have been working hard on finishing projects around the house.  That's the thing not everyone realizes when I said we were building our house.  We didn't pay someone else to do everything for us we have literally been doing it ourselves.  And we slowed way down on projects after we moved in, but got a little fuel in our tanks recently and have been doing some things.  We have been caulking and painting (the whole house exterior, by hand), covering our back porch and touching up paint inside.  The exterior is finally coming together which I am thrilled about.  I also like keeping busy on projects, because it keeps my anxiety at bay.

My anxiety has been doing better.  It comes and goes, but much less than it use to.  I hope over the coming months on this medication, it comes less and less.  Still liking the medicine though.

Welcome Change

Clayton's welcoming in fall with a snotty nose this week.  But that isn't deterring us from LOVING this weather.  AMAZING.  Oh how I have missed fall.  This is my favorite time of year.

I'm even more grateful that I am feeling like myself again and can hopefully thoroughly enjoy the fall, football and holiday seasons.  My neurologist, who diagnosed the benign tumor on my back has been helping me with some anxiety meds as well.  The cliff notes of her words are that I've had too much stress for too long and need to give my head a break and a chance to restore its normal chemical balance.  The disruption of those normal chemical levels due to so much stress over the last seven years left me with a chemical imbalance that had me exhibiting so many of the physical signs of stress as well as a heightened sensitivity to pain/discomfort.  Her plan is that I stay on this medication for six months to "retrain" my body to hold on to those chemicals naturally not only restoring the correct chemical balance, but maintaining it.  The mind is an incredibly powerful tool that people underestimate.  Understanding what various types of trauma can do to the mind is very important.  Equally important is understanding that the body works as a whole;  it only takes one thing being "off" to set off a chain reaction (such as physical pain, nausea, weight gain/loss, etc.).  Anyhow, I adore my neurologist and am so glad she is in my corner.
I'm being open about all of this because of all the reasons I've said before, plus multiple people have expressed that they wondered how I had coped with everything.  Well...I haven't.  Not really.  I thought I had, but these last few months I have really realized that I haven't.  I have been in constant survival mode and haven't taken the time to cope.  The closest I came was attempting to cut everything out of my life that I feasibly could that caused me stress.  For so long, I was so proud of myself thinking I had managed everything on my own, never needed medication, wasn't depressed, had a good positive outlook and felt blessed in-spite of our horrible circumstances.  I was so focused and proud of myself for not allowing my situation to depress me that I didn't give much thought to the stress build up and the resulting anxiety.  Actions on my part which led up to the last year and a half and particularly to the last few months of my trying to work things out.
So when people wonder how I've done it, know that I didn't.  It's a mistake I would hope others could learn from because the past year and a half for me was pretty rough personally (honestly you can look at me and tell).  Thankfully building our house served as a distraction or I fear it would have been even worse.  It isn't enough to have a good outlook in spite of the hard times or a hard life; the stress is still there and you have to find a way to deal with it.  I will say this though, I have tremendous love for two ladies I worked with during that first year of Clayton's cancer: Gina and Karen.  Going to work with them everyday and laughing with them did help me cope in those early days.  They kept my head above water then and it was because we laughed.  Because honestly the three of us had one of the crumbiest jobs dealing with grumpy people and yet we laughed every day.  And while I don't miss that job in the slightest, I miss laughing with them.
I think my lack of coping with my stress was one reason I was always looking for projects like grad school or the thrift shop we did for the foundation, etc.  I think I was looking for distractions.  Which just made everything worse because nothing was ever more than a band-aid.  But now I have been on this new medicine for about a month and I am finally feeling like myself again.  No more emotional eating.  No desperate search for my next distraction.  Less physical pain.  Less anxiety.  Just me.  I think even Clayton has noticed.  He is going through a SERIOUS mommy phase now and I think its because he's like "yay, my mommy's back".  I mean serious mommy phase.
I definitely have not figured out all the answers and I don't know that I won't find myself back in a similar situation again, but for now I feel great and I feel like me again.  The trick is going to be handling my stress moving forward because Clayton's battles are on going, which means my stress will be too.
So I wish I had some magic wisdom for mom's like me or any mom for that matter, but I don't.  All I have is DO NOT underestimate what your stress can do to your life.  I did.  And I have paid a high price for it in ways people will never know.  So don't be like me and assume that just because you feel blessed and have a positive outlook that all is well.  You have to find a way to work through your stress.  That might mean different things for different people.  For me, our family has made some changes I'll tell you about in another post, but my stress became so severe that I needed the extra help the medicine had to offer.
So just like the trees this fall, I get to shed some of my leaves, rest for the winter and then begin again...

New Face

Much like my life, the blog needed a facelift.  So new name and address to make it easier to find and remember, but you can still find your way here using the same ole www.keepingupwithclayton.blogspot.com.
OR you can use the new address www.catchingclayton.com
Whatever floats your boat.  Either way this is our updated family blog for updates on Clayton where we've been, where we're going, how we've coped and how we're healing.  This is not the life I dreamed of, but it is the one I desperately want to live for.  Hopefully this blog will be filled with all of our new adventures, triumphs, failures and flops.  At the end of the day, this is our tale.  We're authentic...we win some, we lose some, but we are us: the bookworm, the outdoorsman and the special needs shot of awesomeness we call Clayton.

To CATCH:

1

a :  to capture or seize especially after pursuit <catch a thief>

b :  to take or entangle in or as if in a snare <catch fish in a net>

c :  to discover unexpectedly :  find <caught in the act>

d :  to become suddenly aware of <caught me looking at him>

2

a :  to take hold of :  seize

b :  to affect suddenly

c :  to grasp and hold on to (something in motion) <catch a fly ball>

d :  to obtain through effort :  get <catch a ride>

3

a :  to become affected by

b :  to respond sympathetically to the point of being imbued with <catch the spirit of an occasion>

c :  to be struck by <he caught a bullet in the leg>

d :  to be subjected to :  receive <catch hell>

Decisions and Wins

OK.  So it took me some time to sit and blog since my birthday.  I've had too much in my head I had to work out and get straight.  Things like Clayton's school, the question of his therapy services, his primary care doctor situation, my school, George's school...priorities.  I needed to get some things straight.  So on to the updates...
Clayton's last scans from April were good and we scan again in September.  If his September scans are good that will be three years post chemo with clear scans.  That's a milestone.  We will also be doing another stent replacement in September.  We will visit with the Orlando Urologist in October to get a better game plan on his kidney and sometime between September and December we have to find a good week to go to Dallas.  So we are going to have a busy fall.
Which leads me to my decisions.  I had applied to go to grad school through Troy online getting a Master's in History with the thought that I might could teach on the college level and possibly have a schedule that would work with Clayton and provide a second income.  I went through the motions, was accepted and even had my schedule, but ultimately I had to decide it wasn't best.  Sadly, I don't have time, while also focusing on my health, Clayton's medical, Clayton's school, Clayton's therapy and helping George stay on track with his school.  We made the decision years ago that George's job was to work and mine was to care for Clayton.  Which means our goal is for George to finish school and get a better paying job and for me to manage everything Clayton.  So no school for me.  It's hard for me because I hate sitting still.  I would love to travel the country doing something different every few months.  So feeling like I'm sitting still in my current situation always leads to me brainstorming new ideas to mix it up.  None of which work with our reality, but I brainstorm none the less.  So, since I was running out of time to make these decisions, I really had to take the time to sort it out before August.
Then there is Clayton's schooling.  After talking with folks at the county, public school really will not work for Clayton.  They either offer a few hours a week of homebound services or all day school days; one is not enough and the other is too much.  Clayton needs more than the homebound services, but anyone who knows him knows an all day school day won't work for him.  I was semi hopeful they might have something that would work because it would give me a much needed break, but they don't.  So homeschool again it is.  Plus I can't lie, I hate the idea of having to answer to someone anytime we want to keep him out of school.  Some days he could be having a bad day and other days we might want to go on a vacation, who knows, but I have zero interest in answering to a school system for that.  I love the flexibility of homeschooling.  And since I have to stay at home with him anyway...As for people wondering why I "have to" stay home with him...childcare in general is ridiculously costly, imagine childcare for a special needs child like Clayton.  Even on two incomes, we couldn't afford that;  we were having issues with that when I was working.
Which brings us to the next update...Clayton's therapy services.  The Autism center in the area finally opened and we signed Clayton up.  We have done his speech therapy evaluation and his occupational therapy evaluation and are about to start his sessions.  I really like the center so far and am excited for Clayton.  Our insurance covers his sessions 80/20.  Which is decent, but would still be tough with four sessions a week on top of his medical expenses.  But here is the kicker...insurance only covers 30 sessions per year.  30  sessions per year when taking 4 sessions per week (2 speech, 2 occupational), you do the math.  Not gonna get us very far.  So as great as the place is and as much as we think we like it, I have no idea how we are going to be able to get him the continued services he needs.  Still working on that one.  But the good news is for now he's in.

Clayton has to be one of the most expensive children in the history of expensive children.  I think it is only fair if God grants us wealth to cover these expenses...just saying.

When you have a kid with whom so much goes wrong it can easily feel like you just can't win.  Cancer, kidney disease, 100 degree scoliosis/kyphosis (twice), autism, non verbal, respiratory issues, MH precautions, I can go on...but you get it.  It's a lot.  A lot of situations in which winning is not the term that comes to mind.  Especially when you have fails like being shunned from your pediatricians office all because as parents we reserve the right to decide what is best for our child.  As I've said before, we choose not to give Clayton full vaccinations.  Quick recap: He had all of his vaccinations up until 3 yrs and had to discontinue them during his cancer treatment.  After much consideration, we decided the best route for us was to pick and choose which vaccinations where necessary risks and which where not.  We have seen enough that we are not comfortable injecting his seemingly sensitive/traumatized body with every vaccination, given that scientists and parents can not seem to agree on their safety.  So we choose to proceed with caution.  Anyhow, we discovered no private practice pediatrician will touch him unless we agree to full vaccinations.  That led us to the Sacred Heart Pediatric Care Center.  But that was really not our cup of tea for multiple reasons.  So it occurred to me that a family practitioner might not feel the same way as a pediatrician.  After all, plenty of adults are walking around not fully vaccinated.  I did have one office tell me no and then...ba- bam!  Score for Rachel.  After checking out that route and asking the recommendation of a dear physician friend, we found Clayton a LOCAL family practitioner that is happy to give him the vaccinations we are comfortable with and abstain from those we are weary about.  Winning.

I needed that.  Its been a tough few weeks.
Again, my stance on vaccinations is my personal decision.  It is not a fad or decision made for trivial reasons.  Having been with Clayton on every step of his medical journey, I believe he should qualify for a medical exemption due to the sensitive nature of his body and his uncommon reactions to various things.  Some doctors disagree with my decision because he is not currently considered immunocompromised.  However, those doctors don't have to care for him 24/7 if something goes wrong which is why ultimately it is my decision.  And seeing as he is already autistic, that clearly is not my concern so please just don't go there.

As for me, my doctor decided to tell me I had Generalized Anxiety Disorder.  No shit sherlock.  This I know.  Have you met my family?  Anxiety is a common theme.  The problem isn't that I have Generalized Anxiety Disorder, the problem is that I have Generalized Anxiety Disorder and a kid like Clayton.  It's like a twisted joke to have the two...together.  In cases such as these it should be one or the other, not both.  So anyway, after years of Clayton stress, things going downhill, no end in sight, everything with my recent pregnancy and increasing physical symptoms of stress, I have finally gotten some meds.  I am not big on meds; though I don't agree with the stigma around them.  I prefer to manage things naturally if possible.  For a while that worked for me, but eventually things got to be too much.  My neurologist and family practitioner agreed I was showing too many physical symptoms of stress and needed help to correct the chemical imbalance that has resulted from 7 years of extreme stress.  So I'm trying some meds for maybe six months to see if they help.  Lord I hope so.  Again, I hope people have the sense to distinguish between anxiety and depression.  They are completely different.  I have anxiety...and for good reason.  I am not however depressed at all.  I love my life and I want to be present for it.
As for my back, I have a Vertebral Hemangioma.  It is a benign tumor on my spine (T8) that protrudes into my epidural space which consequently causes some of my symptoms.  The majority of these benign tumors are not symptomatic and need no treatment.  Since mine is symptomatic, I am waiting to see a neurosurgeon to see what course of treatment, if any he would like to take.  Since it is a benign tumor though, it will be 2-3 months before I get to see the neurosurgeon.  He seems to be a busy man.  In the mean time, if my symptoms need management, my neurologist can handle that.  If my symptoms get worse, I might can get in to see the neurosurgeon sooner.  So nothing on that front right now.

I think that covers the main updates.  I'll try and post more often!

29 and Healing

So if I'm quiet (not posting), there are usually multiple reasons.  But ultimately it comes down to the fact that I have nothing to say that I think folks would like to hear.  Sometimes it feels like folks want me to be all sunshine and butterflies and "the good Lord has graced me with this special life", etc.  And for the better part of the past seven years I have been optimistic and positive.  I have found the reason for most things and focused on the learning opportunities that have been presented to me.  But right now, despite my positivity, I have dark days.  I am tired.  Tired in a way I can't explain.  I have been fighting for my kid's life for seven years with no end in sight.  I have little left to give to anyone.  I did not dream of this life.  It never even found its way into my nightmares, yet here I stand in the midst of it.  And despite its horrid struggles, I love this life of mine and I still manage to find the light.  But I would be lying if I said I didn't have dark days.

I am struggling.  I have no shame in admitting that.  I know lots of folks like to hide their struggles and keep secrets, but you can't learn from nor find comfort in secrets.  I would rather share my ups and downs in hopes of comforting someone and letting them know they aren't alone.  Because sitting where I sit, life feels immensely lonely.  So I choose to share because like I said nobody learns a damn thing from keeping secrets.  I have no time or patience for ideological fronts.  

I live in a place of anxiety and fear riddled with guilt and shame; all over my child and his health and my tortured heart over living this life.  Because I don't want this, and saying that makes me feel like a monster.  I want to run away every damn day, which makes me feel guilty as hell.  But despite the urge to run, I love my kid to pieces and I am loyal, so I know I can never run away.  I stay and I fight like hell for him. But that doesn't leave me feeling any less guilty for wanting to run.  I have overwhelming anxiety daily knowing that our story is going to go one of two ways: A. Clayton lives a relatively long life always in need of medical assistance or B. One day he loses all of his battles and I have to watch my child die.  Both of these options suck. I know I am suppose to say option A is what I want.  And it isn't that I don't want A, it's like choosing between shit and crap.  Lose my child or spend many years watching him be poked and prodded and tortured through exhausting medical ordeals.  Neither is ideal.  They both suck.  My heart hurts.  I constantly feel guilty because all I want is peace, but a peaceful life with Clayton means a life without Clayton.  I fear the future because I know no matter which path it takes, it will hurt.  It's this nasty circle of constant guilt, shame, fear and anxiety; because no matter what I think or feel there is never a good answer.  There is no right.

And while I have been suppressing these things and thinking them to myself and silently struggling with them for years, someone dared to point out the other day without realizing what they were saying that I would likely one day watch my child die.  A doctor pointed this out.  I told him it was ok.  I told him I knew that.  I tried to make him feel better for his slip.  And why?  He just said the thing that haunts my mind and tortures my soul every day and I was sitting there trying to keep him from feeling bad for saying it.  That is my problem.  I focus on the wrong things allowing all the things I should be focusing on to build up until I begin to reach my limits.

My kid is sick.  He hasn't gained weight in a year-maybe more, his urine is usually discolored and his kidney has already acted up once this year, reminding us of the looming transplant he will one day need...oh and for the second time in his life he has a nearly 100 degree curve in his back just daring to cripple him.  I live in fear everyday, never knowing what day will be the worst day.  My stress has unfairly taken over my body in such a way that my emotional anguish has begun to present as physical pain.  Daily pain.  It's as though my anguish is slowly and pain-stakingly squeezing the life out of me each day.  How appropriate that my insides and my outsides should coordinate with one another.  

We have a natural fight or flight response.  My situation breaks every law of that natural response.  I am both compelled to run and willed to stay.  I want to run every day because this wasn't the life I wanted, but as I said, I know I will never leave; and oddly enough despite the struggles, I love my life.  I love this sweet boy so much, I will always stay.  I will stay and watch him get sicker.  I will stay even though it has all began to physically hurt me.  I will stay because I am his mother and as much as this life has brought me pain, it has also brought me a beautiful boy and I rock at being his mom.  I don't know how long my life will continue on this way, but what I know is the pain is not letting up.  The fear is growing stronger.  And the anxiety is like an overbearing parent.  I don't know how to watch my child's body betray him and yet I am forced to.  I am forced to watch because right now what he needs he can't have until he gets much worse.  So I must watch him deteriorate.  How?  As a parent, how do you just sit and watch your kid get sicker and sicker?  I truly don't know.  All I can say is it is unbearably painful and yet you are forced to find a way to bear it because your child needs you.

They like to say "God never gives you more than you can handle".  I call bullshit.  I'm all about God.  I get that I am weak and He is strong and I cannot get through life with out Him.  I get that and I believe that, but when it comes to that saying, I call bullshit.  What I could handle ended some time ago.  I am now in the stage of trying not to die inside.  At the very least, I am trying not to be crippled by my pain. It takes a concerted effort to get through each day right now.  That's sad.  It is sad that I have reached a point where every day requires so much effort to stay afloat.  I've begun to talk to a counselor just so I can have some one to say all those things to that I otherwise keep inside.  Those things that bog me down.  My doctor, someone I have seen since I was a kid and someone I trust and respect prescribed kickboxing.  Something to get it out of my system so to speak.  That same doctor is the one who made the slip.  And the one who commented that my situation sucks.  He's right.  Maybe admitting things are really tough in every way and no longer trying to act like things are mostly ok and maintaining this "I got this attitude" is what I need.  It can be hard to break patterns though.  I come from a family on all sides where for the most part you keep things to yourself.  So the concept of truly being open about my struggles, my strengths and my weaknesses is not the example that was set for me.  But it is the example I wish to set.  I know through life with Clayton that being open is both how you learn and how you teach valuable lessons.  I have benefitted from others being so raw and I wish to live in that same way.  That is the point...I wish to live.  I wish to live.  I wish to laugh. I wish to learn. I wish to love.  I can do none of those things effectively while my heart is quietly harboring my pain.  So now it is time to begin to heal and hopefully cope better in the future.

Today I turned 29.  I'm determined that my 29th year will be different.  I am not afraid nor ashamed to admit that I am broken.  I am proud of every step of our journey, but it has been a journey one cannot escape without scars.  My problem is that my scars have not yet healed and that I have had to sacrifice who I am to be Clayton's mom in more ways than I can count.  So this year I am going to heal and I am going to get back to being me.  And while this blog is about keeping up with Clayton, it is also going to be about my journey.  When you have a sick child, you can never imagine the ways in which that will change you.  Clayton's struggles have broken my heart not only because they have meant his pain, but because they have stolen my time.  Years of my time.  I just hope and pray that I have plenty of time left to make up for what as been lost.  I hope to make up for lost time through new adventures with Clayton.

I had multiple conversations today, that included people telling me not to fret about getting older, etc.  I want to make this point abundantly clear:

I am honored to be growing older.  

Every day with which I am gifted and every birthday that comes to pass is a luxury.  I am excited to grow older and I don't care how many wrinkles or sun spots or whatever that may include.  

I have no doubt growing old can be hard.  Not doubt.  However, it is a gift that many do not get.  It is a gift to watch your children and grandchildren and great grandchildren grow.  It is a gift to grow old with your spouse.  It is a gift to watch your hair turn gray or white.  Crows feet are a gift.  Even the aches and pains of old age are a gift.  All of these things mean your here.  It's means you made it through another day, you went to sleep and even if you woke up feeling like crap, you woke up!  So I am thrilled to be gifted the time to grow old and happily accept anything that comes along with that as everyone should be.  Too many people have their lives taken at a young age and never see the gifts that come with growing old.  So I am ecstatic for every birthday of mine that comes to pass.

And in case my rambling caused confusion I will set the record straight...  I suffer from anxiety, not depression...there is a difference.  Despite our struggles, I love my life so damn much I live in fear I won't get to grow old in this life.  I want to live and I want to laugh and I want to learn and I hope to do it all with Clayton.  And I am going to spend this next year not just sharing Clayton's journey, but my own journey of healing.

Summer Break

Back to the baby man...

December still mystifies me.  Everything happened so fast with his kidney going downhill.  But by the grace of God and I'm sure through prayer, we got Clayton's kidney under control.  The whole thing is still kind of crazy to me.  The doctors were all "transplant or major surgery in the next 6 months" until they weren't.  Now they are all "monitor and wait".  So we are.  Thankfully we are finally getting a break from co-pays and hospital fees for a couple months.  We get to monitor his blood pressure from home and do labs locally through the summer.  Then August begins the mad dash again.  We have to do all new tests on his kidney and all new cancer scans.  September will be Texas. October is Nemours Orlando (prep appointment for future kidney stuff there).  November is always a busy month. Last but not least, December will be a stent replacement.  And all of that is if nothing goes wrong.  No respiratory issues or decline in kidney function or reaction to sedation or dental work or unexpected procedure or hospital visit of some kind. That's the schedule barring any speed bumps.  And well our life wouldn't be our life if we didn't have speed bumps.  They just seem to happen.  So we are going to try really hard to enjoy the next couple months of quiet.

Trying to do all the fun stuff with Clayton we can!

And we can't forget the pup...

Something Old, Something New

In the midst of my feeling like crap the last month, I got an awesome gift.  It was meant to be a Christmas gift from my mother, but the lady working on it had some personal circumstances come up so we waited patiently for her to finish as she could.  And of course it came when I felt too cruddy to share.  So now I'm going to share...

Sorry the pictures aren't the best.  I was trying to snap them one handed with Clayton reaching for my phone.  Obviously, it's a quilt!  But not just any quilt.  It's made from Clayton's clothes!  I have known for a long time I wanted to do something like this, so I saved my favorite clothes of his (or the ones that hold the most memories).  The quilt has clothes from the first five years of his life.  I found a lady on etsy and gathered and mailed her the clothes and told her what pattern I liked.  She took it from there.

Quilts tell stories.  Quilting is an art form and one that is not as popular as it once was.  Since Clayton got cancer, I have become a huge fan of quilts.  We have kid sized quilts from quilt guilds across the country from all our hospital stays.  That has been such an awesome token of love that we have been given by a few friends, but mostly from strangers.  

So anyhow, now we have this amazing quilt that tells Clayton's story.  Nearly every picture on this blog is represented through the fabric on this quilt.  There is clothing given to Clayton from our parents and grandparents and a couple hand-me-downs from my sister's kids.  I am just in love with this.  It is Clayton's story with lives of our family, every home we've shared together, every hospital stay, every plane ride or road trip, every traumatic event, every happy place...seriously, it is all represented here and it is the coolest thing I own.  If there is a fire, this is what I'd grab.  

The one thing everyone might recognize are all his button up shirts from his halo traction.  All five or six are in here.  I could go on and on, but I'll stop myself.  It is awesome and something if folks get the chance to do is worth looking into.  I'll post a link later if anyone is interested, but it's from a lady on Etsy.  I believe her store is called QuiltsByVanessa.  She is out of Crawfordville, FL.

This quilt has definitely been my highlight lately.  I'll post an update on Clayton in the next few days :)

Seasons

There is a season for everything...and eventually each season changes into the next.

No more baby.

I would say I lost the pregnancy, but to me that just sounds as though I should be able to find it.  So, what I will do is say that my pregnancy is over and I doubt I will ever again be pregnant.  AND I am at peace with that.  The details aren't important and certainly aren't anyone's business.  If I'm being completely honest, I would typically be more of an open book...But, all of our parents think the simple explanation above is enough and this particular time I am choosing to take their word for it that one day, I will appreciate having kept details to myself.  If not, maybe one day I will share the details, but not today.  I can also say, that I don't believe that they want to discuss it either, so please respect that privacy and accept this post as the only explanation.

All of that said, I'm ok.  This pregnancy never felt right.  Which is the opposite of my pregnancy with Clayton.  My pregnancy with Clayton never felt wrong and ALWAYS felt right.  That was a distinction I made early on this time.  But I put on my happy-everything-is-going-to-work-out face and tried to ignore my intuition.  I even got a cradle, started a list of things we would need and pretty much had names picked out.  All just trying to focus on the positives and the fun stuff.  I tried to push my doubts to the back of my head and was even taking some preggo safe anxiety meds for them.  I did ok for a while.  Then for the last few weeks I have been sick.  Around the clock sick.  It was like having the stomach bug nausea with minimal throwing up 24 hours a day with no end in sight.  It made it much harder to focus on the positives.  I felt like my life fell apart once I got sick.  It became impossible to ignore the fact that the pregnancy didn't feel right once that kicked in.  I was too sick for nearly everything.  And my health issues (me and the doctor think from chronic stress) that started after Clayton and I returned from Texas the other summer only got worse during the pregnancy.  Things like chronic pain throughout my torso, back and neck and numbness and tingling in my extremeties.  I was only in my first trimester, but because of my personal health issues, it felt like my third.  It was quite miserable.

And now, everything is over.  And I am OK.  I am OK to the point I almost feel guilty for feeling so OK.  This whole experience was God providing me with answers I have been looking for for years.  I know that 100% and that has a lot to do with why I am so OK.  Part of those answers were about what is right for Clayton.  And I know beyond a shadow of a doubt that right now a sibling is not right for Clayton.  Again, I tried to be optimistic in the beginning, but I know now.  I know that he still needs us too much.  I know that until we get through his kidney and his back the time is not right.  He needs all of us right now.  For the bad times and to provide him with fun times.  I hate that it took this (VERY) unexpected experience for me to find the answers I have been searching for, but I cannot clearly describe the overwhelming sense of peace having these answers provides me.  I am so OK because I know God provided me the answers I so desperately needed through this experience.  And knowing those answers, I know that the way things have worked out is what's best for Clayton.  So when I say I am at peace, I mean it.

My only regret is that we as humans are so ridiculously stupid or stubborn (not sure which) that we need to go through things like this to find the answers we seek.  Because despite my peace with the situation, I am all too aware that the beginnings of a life were started and then lost before it could begin.  I told George I would like to plant a tree.  Maybe one Clayton can one day play under and we can gaze at from our house to mark this season of our lives.

I am so thankful for my sweet buddy and that this weight (of unanswered questions) has now been lifted and that I can thoroughly enjoy my time with him without questions and what ifs.  He is my life.  He is everything good, everything right and everything beautiful in this world.  I am so grateful to be his mom and that is all I need.  Maybe one day in ten years or so we can adopt if that is what feels right.  But for now life is just about keeping Clayton happy and healthy.

Thank You

One very important thing I forgot to add yesterday was a thank you to our sisters, brother and all of our parents for their enthusiasm with our news.  Especially with my anxiety over the situation, y'all's enthusiasm means a lot!

Now I just need everyone to bear with me while I handle this the best I can.  It's not that I'm not excited, I am.  I just have at least the same amount of fear as I do excitement...maybe more.  I made my game plan to handle this and thought I was doing really well and then Sunday night I had the worst anxiety attack of my life.  So bad, that even though I knew it was likely anxiety, I went to the ER just to be sure it wasn't a heart attack or something.  It felt like something.  Chest pain, back and neck pain shortness of breath.  It definitely had me worked up.  Sadly, after 7 years with Clayton I've just been traumatized. And yes, that's different than crazy because I have a lot of really good reasons to have been traumatized.  I feel a bit like damaged goods.  Thank goodness the OB's office called me in something for anxiety (safe for baby of course) at my request.  Praying that helps.  Because anxiety and stress will make it harder to successfully carry a healthy baby.  And despite all my fears I LOVE the idea of Clayton getting a buddy.  So I am excited, truly.  I just have to work through the fear too.  I think once we past the point of finding out the gender I will be much better off.  It was before that point that we found out Clayton was going to have medical issues, so if we can pass that point free and clear I think I will be able to breath a little easier.

Also thank you to our friends and family on Facebook and all their enthusiastic congratulations!  

Surprise...

So, we're in shock.  This is a HUGE unplanned SURPRISE.  It is very early, but we couldn't keep this secret from our immediate family and we knew they wouldn't be able to keep it to themselves for long, so we decided to go ahead and announce it on our own terms.  My due date should be around December 4th.  We are obviously still in the miscarriage high risk zone of the first trimester, but we decided to share in spite of that.  We decided that no matter what happens, this was part of our story with Clayton and we had no reason for secrecy.  If for some reason this pregnancy does not work out than at the very least some of our family might now have some answers they've been wanting to know and George and I might find a few answers ourselves.  We are whole-heartedly along for the ride of whatever master plan He has waiting for us.

I was alone when I found out and quickly became hysterical telling George I needed him home.  Once he got home, I couldn't even tell him.  I just sat on the edge of the bed crying pointing at the bathroom.  He kind of laughed when he saw the tests everywhere.  He handled it much better than I did.  Apparently, he had already told someone he suspected as much.

We have talked about this for years.  I know some folks have wondered since it's been nearly seven years since Clayton.  It has been a very delicate subject for me.  I have always felt like with Clayton, being Clayton, I "couldn't" have another child even if I wanted to.  He demanded so much.  And I am happy to meet those demands.  So even though we have considered the idea, we have never felt free to make that choice.  Now I've broken two of my own rules.  In discussing it, we knew if we were going to, it would be in the next couple years, but I told myself I would not be pregnant for our fall Disney trip and Clayton would have to be a full 3 years NED.  We are a couple months from 3 years NED, but we won't do his tests until September.  And if all goes well, I'll be 7 months in Disney now.  All of which is less than ideal to me.  But I keep telling myself two things...(A)  For it to happen now might be a sign that with all we have going on with Clayton, this is our only window and so God rushed things along and (B) George was willing to do whatever I wanted, but I was never able to make up my mind, so this way, God showed us His decision, which brings us back to (A).

So why was I crying?  Well, when I took the test, I glanced at it as I set it on the counter only to see that the lines were starting to form already.  Mind. Blown.  But I didn't have a chance to watch it change because the dog had peed in the house and I was off to clean it up before Clayton went to sliding.  Ironically, the dog is in heat right now; poor thing has trouble holding in her pee since she's been this way.  So when I got back and saw the positive results, I immediately looked at Clayton and burst into tears.  It has finally started to feel like he and I have a handle on things.  We can do so much on our own now.  The idea of throwing another child in there just seemed to ruin that.  I didn't want anything to take away from Clayton.  He runs our little world and we let him.  This would change everything.  The idea of taking anything away from him just broke my heart, he deserves all of us.

Next there was an immediate flood of anxiety.  Crap can I have a healthy baby...will I be healthy...can I make it through labor and delivery...aww shit.  My first pregnancy was anxiety ridden from the beginning (but especially from 14 weeks onward) and I can't foresee this one being much different.  The last seven years have given me a lot to be anxious about.

On that subject I know there will be some people who think we are crazy or irresponsible for this to happen given everything with Clayton.  I know that whether folks are positive or negative about this most folks will wonder in the back of their mind about the health of this baby.  So let me say this...We aren't stupid.  We know due to our first experience and every day since that we might be in for a lot of heartbreak.  And what we ask is that if you are negative or pessimistic about this life event of ours, please keep it to yourself.  It's enough that I feel inadequate on my own as a mother-to-be, I really will not be tolerant of any outside negativity.  One of the most important things for me will be to suppress my fears and anxiety throughout this and those anxieties will be challenge enough without the ( possibly unintentional, but still) hurtful thoughts of others.  Because know matter what people think, I can say that we have already thought about it and whether someone might realize it or not it is hurtful to me.  Like I said, I have always been sensitive with the idea of another child.  The negative thoughts of others are why.  Not because I care what folks think, but because those same thoughts swim in my mind everyday, I don't need to be reminded of them by outsiders.  In fact for as much time as possible throughout this pregnancy, I am going to be trying to forget them when it isn't absolutely necessary to bring them up.  I aim to be as stress free and healthy as possible for this pregnancy.  So even if you are expressing your concerns out of love, don't.  There is not a concern anyone could have I haven't already had, plus a million more.  What we need is positivity and prayers.  Please just pray that this will be a healthy baby and that I will be healthy throughout this and nothing will happen to me so I can still be here for Clayton during and after.  I mean it, we desperately need those two prayers!  

I do want to point out to some of those that are concerned, that there are plenty of families who have had a child with health concerns and who have still gone on to have heathy children.  We have always been told there was no genetic fault from George or I with Clayton's challenges.  A random gene mutation is responsible for everything from his learning challenges to his severe medical needs.  Which by the way we adore his learning challenges.  They only make folks love him more.  We would not trade those for anything.  It is only the medical stuff we could do without.  Even some of the medical would be ok, just not all of it.  We have been exhausted from it all and it has definitely been taking its toll lately.  But that's another post entirely.

Since we did not knowingly make this decision, we have a lot to figure.  But we'll figure it out.  Thank God we are at least settled in our new house and George will be over half way to his degree when the baby comes. When the baby comes should be interesting enough because it will be in the middle of George's final exams for school.  Poor guy, he's never gonna get to sleep.

All of that said, I have grown more excited about it since finding out.  All part of my anti-anxiety plan.  Focus on the fun stuff...and lots of reading to distract myself.  It's funny because Clayton is both the number one reason I don't want another child and the number one reason I do.  Such a tug of emotions.  The idea of him having a buddy makes me ecstatic!  I think that for kids like Clayton, siblings are important and beneficial in every way.  I just have to get past the idea, that Clayton won't have all of me now.  I also think the timing of Clayton's development with this baby's could be extremely helpful to him as far as communicating and progression goes.  There is so much good that can come from this if we can get past all the shock and worry.  Shock is an understatement.  I made George go get more pregnancy tests and a different brand just to be sure there wasn't some fluke.  I really and truly could not believe it.

So anyway, SURPRISE! And please, please, please pray for our family with this next chapter.  

Port of Ronald

We made it through yesterday and last night with no complications.  Yesterday morning Clayton had his bone marrows done and his port removed.  And because of his reactions in September and last week, we stayed at the Ronald in Pensacola for the night so that if something came up post-op, we would be near the hospital.  Thankfully, all was well.

Clayton's cancer scans mostly looked good.  Something showed up on one of his lungs.  They aren't sure what it is, but since it did not show up on the MIBG, they don't think it is neuroblastoma.  They think it is just related to the degree to which his lungs are contorted from his scoliosis.  To be sure we will do a CT again in April.  We are going to attempt it without sedation though.  Fingers crossed that works!

As for his port, it had been in for two years, so it had to go.  He is such a hard stick (think IV) though that he may need another one in the future though.  We'll see.

I want to take a minute though to encourage folks to support Ronald McDonald House charities.  No matter where we go for Clayton's treatment, there they are.  They provide families with a safe, comforting and affordable place to stay near the hospital.  There are so many wonderful things about this charity and what they do for families.  I will say though that every house is slightly different.  Some do their thing better than others.  Our favorites so far are RMH New York City and RMH Northwest Florida (Pensacola).  They are exceptional!  So much fun for the kids, always a meal for families and just plain ole awesome!

They had a goodie bag for Clayton when we got there...sweet folks filled it with a few of his favorite things!

03-11-15

6:15 a.m- get out the door to head to Pensacola for Scans

7:15- check Clayton in for MIBG scan and CT with sedation.

8:45- Anesthesiologist running behind, Clayton just put to sleep.

Grab Breakfast...and wait...9...10...11...meanwhile parking my rump in a super stellar hospital chair.

11:45- see them roll a sedated Clayton back to recovery

12:15 p.m- head back to recovery to see Clayton and wake him up.  

My travel buddy for the morning (my mother) notices a shaking coming from my sleeping child periodically.  We also can hear he has some rattling.  Doctors and nurses think he's fine so,

1:00- we're discharged.  Head home.  We both note he is much more rattly/wheezy than normal.

2:00-  get home give him a dose of steroid for the respiratory issues...watch him.

2:40- he feels as though he is starting to get warm, acting like his teeth might be sore, give him Tylenol.  Keep watching him...

3:00-  think his breathing is getting better.  Feed the chicks, collect eggs, start to plan dinner

3:15-  maybe he's not getting better

3:30- grab book bag and hightail it to Sacred Heart.

3:45- explain thing to hemoc/onc nurse on phone.  Debate going to Thomas or trying to get to Sacred Heart.  Clayton is awake and his O2 is in the 90's so we decide Sacred Heart is best.  The problem was not that his stats were dropping, but rather than he was "pulling" excessively. He should not have been working so hard to breath in and out.  His body behaving that way can only keep his stats up so long before his body tires out and function diminishes.

4:00- continue driving like a (safe) crazy eyed mom with my flashers on trying to get my kid to the ER

4:40- arrive at Sacred Heart Pediatric ER.  Immediately get taken to a room, see doctor and do chest x-ray.  Everybody says Clayton sounds like crap, good thing we brought him in.

5:30- George gets there.  Both feeling relieved Clayton is safely where he needs to be if his respiratory problems persist.  Start breathing treatments and they give him more steroids.

6:30- go grab us dinner

7:00-  eat dinner, doctor comes in, says he's undecided about Clayton.  They don't see a reason for the respiratory issues, yet he sounds crappy.  However he has improved slightly since his arrival with more steroids and breathing treatments.  The doctor would admit him, but the peds floor is full so we would essentially be staying in the ER and he doesn't want him catching germs either.  So if we're comfortable, he'll discharge us with the same instructions and meds he would have in the hospital if inpatient and we can come right back if there is a problem.  We talk it over and decide our best bet is to stay nearby.  Begin discharge arrangements.

9:00- As luck would have it the Ronald is full for the night.  So then my Nana graciously puts us up at a nearby hotel.  We check in and I leave George and Clayton so I can run home, grab clothes and let the dog out.

9:30- I get to Seminole and realize in all the crazy earlier, my keys ended up in Clayton's book bag...which is back at the hotel...in Pensacola. (Insert curse word here). Turn around. Head back to hotel.

10:15- after all the crazy and the hiccups,  I'm not headed back to the hotel to then go home and come back again.  So I just send George home for the night.  (Somebody had to go let the dog out and nobody back home has a key...note to self: give someone a key). So George leaves.

12:00 a.m- Clayton pukes.  What?

12:30- more puke...much more

1:30- more puke...Clayton and I now smell like green beans covered in fermented apple juice and all we have are the clothes on our back- the same clothes we wore out the door when we left our house at 6:15 the morning before.  Call George to come back-with clothes for me and the kiddo.

2:30- more puke. George arrives.

3:00 - we finally get to bed...with one eye open of course hoping the puking is over. 

We then get up early, grab breakfast and George drives in to work while Clayton and I stay behind for an appointment with the pulmonologist at 11.  The pulmonologist seems to think that everything was a reaction to some combination of the injections Clayton got, the steroids, the SSKI or the sedation.  Not sure what specifically.  The odd thing is last September after this exact same MIBG scan with all the same components, we got home and within 3 hours Clayton had a fever so high he was nearly unresponsive and beginning to have respiratory issues.  So of course we whisked him off to the hospital then too.  It must be something connected to that test specifically because he has been sedated 2-3 times with the same sedation between September and now with no problems.  Whatever it is it's new and potentially getting worse each time.  Moving forward we will be cautious and I think stay at the Ronald on nights following any sedations (it's right beside Sacred Heart).  Which brings us to more Pensacola appointments this week and another procedure (with sedation) this Wednesday.  The good news is that the scan and it's components that might be causing a problem are now something we only have to do every 6 months...yay!

Anyhow, just another day in the life of Clayton.  While the situation usually isn't the same, these kinds of hiccups seem common with my sweet little bug :(

Not gonna let it keep us down...

Our Time Bombs

We are sitting ducks.  Just waiting.  Waiting for life with Clayton to take a mean turn as we once again enter into battle with either his kidney or his back.  So while life is sweet, waiting bites a big one.  

We will be doing cancer scans over the next two weeks and if they look good, then we will be taking his port out in a couple weeks as well!  These are our first scans in 6 months!  First time we have gone that long.  Prayers please.

Now for his back...

As I mentioned before, we had a plan with a local doctor for his back pre cancer diagnosis.  Then everything got postponed.  Here is a fairly decent look at his back in December following his November cancer diagnosis...

You can see a slight curve, but it's not crazy.  So that was December 2011.  From there it was nonstop cancer stuff until May 2013; which meant we COULD NOT do anything about his back during that time.  Here is another fairly decent look at his back from January 2013...

I know these aren't the best views.  They weren't meant to show the progression of his back, but they do.  Anyway, you can see how the curve got significantly worse.  Got worse, when we couldn't. do. anything.  Then enter the before and after a of his back during his days at TSRHC...

The left pic is before everything (June 2013) and the right is post traction and surgery (September 2013).  So you can see how good things looked right after his surgery.  The problem is it didn't last.  We knew it could get worse above and below the area they modified on his spine, but for it to happen so quickly shocked us all.  For George and I, it felt like our efforts and Clayton's pain that summer, accomplished little to nothing.  It seemed like the surgery was not as successful as we had hoped. BUT X-rays don't lie.  The surgery did it's job.  Unfortunately Clayton's back found a way above and below the surgery to fandangle it's way right back into a similar curve.  So again, here is September 2013...

 Now here is April 2014...

And February 2015...

Not a huge difference from April to February (about 10 degrees), but from post-op to April (just 8 months time), his back got horrifically worse...again.  Dr. Sucato is definitely saddened by this. We knew it would most likely try to curve again either above or below the fused portion as he grew, but we weren't expecting it to happen so quickly.  The answer is a final fusion (fusing the entire spine together-means his torso can't grow).  However, Clayton is too young for that right now which is the issue.  Ideally they would like him to be at least 12 for that surgery, but Dr. Sucato does not feel Clayton will be able to wait that long.  The youngest they would do it would be 8; but only if they felt they absolutely had to.  So, for now, we wait.  We wait for his back to implode so to speak and wreak more havoc on our lives...particularly Clayton's life.  Knowing the future of trying to explain to him what they need to do and the looks of betrayal when he wakes up post-op, breaks my heart.  Once again, prayers please.

About his kidney...Our other time bomb.  I know some folks might be wondering because at Christmas, things seemed so urgent and then nothing.  Well, we are just rolling with what the doctors tell us.  And honestly, from one doctors visit to the next their sense of urgency changes.  Sometimes more, sometimes less.  They don't know what will happen, so neither do we.  We are following Clayton's symptoms and his numbers.  His creatinine that began swiftly rising in December, then came down slightly after adding BP meds, following a low sodium diet and placing a larger ureteral stent.  Then it rose again a little before settling...for now.  This means his kidney function DID decrease overall, but has stopped temporarily.  When it will decrease again, we don't know.  These days his urine is a shade of brownish gold, pink or sweet tea colored more than it's normal.  So there is no doubt, he's sick.  Because as much as the doctors don't know for sure, they do know for sure he will need a transplant.  The problem with kidney issues is that to get the ultimate fix (a new kidney). You have to be REALLY sick.  And he's not sick enough yet to start those procedures.  So really, that's what we are waiting on... For him to get "sick enough".  Sounds horrible huh?  Tell me about it.  And the real kicker?  Both of these time bombs are showing a real possibility of imploding at the same time. Can you see the conundrum?  It would be VERY bad.  Seeing as how the nephrologist said he would have serious reservations about Clayton having any kind of serious surgery other than as related to his kidney, the whole thing is quite scary.  Hello, welcome to hell.  Duration of your stay...TBD. Please pray for us!

As a parent being sidelined to watch your kid get sicker and sicker or more and more disabled is the worst.  So we are in a crappy place right now, but trying to enjoy life all the same.  Things are about to get really bad for Clayton, so we are hoping things can hold off for October so we can take him back to Disney.  Yep, we have a trip planned.  We are going to stay in a camper at Fort Wilderness, attend the Mickey Halloween Party, visit the Give Kids The World Village (the place make a wish kids go- alumni get to come and spend the day there doing whatever) and check out Animal Kingdom again...we will also be paying a visit to his other urologist at Nemours Orlando-to get the ball rolling with a few things there.  I am so stinking excited!  I just want Clayton to be happy and have a blast.  I hope all the bad stuff can wait until after that.  Give my sweet baby one last thrill before his welcome back to the hospital days begin again.  And before those few negative folks out there say anything about us fundraising for his back and kidney (which is coming next) and taking a trip to Disney, let me say this...I don't want to hear it.  Seriously, don't say one word to me about it.  My child goes through hell all the freaking time and he deserves better; the very least we can do as his parents is to try and give him a quick trip to Disney for some fun.  Having to fundraise for Clayton's MASSIVE medical needs does not mean that we should have to sit by watching other folks live, while we bounce from one hospital to the next living in a never ending nightmare.  That is how depression is born.  Hope is found through laughter and happiness and faith that inspite of the bad times God has more out there for you.  Part of that "more", is cherishing those moments with your family and sometimes making the opportunity for those moments. Knowing the little boy Clayton has become and knowing his likely reactions to our upcoming trip are one of the things that keep me going.  It's one of the things that allows me to keep faith that while bad times are ahead, so are good times.  We try and make the most of our everyday, but we need things to look forward to as well, especially knowing there is so much to dread.  If it was you in my shoes with your kid you would do the SAME thing.  Don't pretend you wouldn't.  Not to mention, as with everything we are doing these days, we are approaching our trip in a modest, budget friendly, affordable way...hence staying in a camper at Fort Wilderness.  FYI parents out there if you like Disney and don't have a Disney Visa, get one!  We spent the last three years building up points on ours and have enough to cover the cost of our accomodations and two days of tickets, plus a little spending money.  Big fan of the Disney Visa here!

Which brings me to fundraising...

With his kidney and back coming up, we are trying to figure out what we should be doing as far as fundraising goes.  We are asking doctors and other families about the kidney stuff trying to figure out what we need to be prepared for.  I wish it wasn't something that was necessary at all.  Unfortunately, with the kidney stuff it really will be.  Transplants live in their own little world and it is a tough one in every way including financially.  Anyway, we are trying to figure out what we need to be preparing for because there in no doubt he will have a transplant.  I don't worry so much about his back because of the funding resources for families at TSRHC, but his transplant funding scares me.  Bad.  Much worse than with his cancer.  Which sucks, because fundraising quite honestly, makes me very uncomfortable.  I don't like it.  I don't like needing it, none of it.  I know that soon we'll set up a go fund me page when we have more info from doctors.  Other than that I have one thing up my sleeve.  This one is a surprise that I'll add will make a great Christmas gift.  Should be out in the fall!  More details to come...

In the mean time, please pray for Clayton's back, pray for his kidney and pray for his cancer!

Thank you for your support!

Home Again

Clayton's dental surgery took two hours longer than expected Friday.  That is the worst part.  When you know your child's procedure should be ending and yet you hear nothing.  You have no clue what is going on and you are just waiting in the nothingness.

Well, the nothingness ended and my baby was returned to me with a mouth resembling that of a botched plastic surgery job.

Poor bug.  The dentist ended up working on 21 teeth!  Insane.  So glad we came to TSRHC for this instead of Pensacola.  These people work on the mouth's of special needs kids all day, everyday.  They have the experience to know what's going on and the patience and dedication to fix it properly.  I doubt Pensacola would have been able to do it all at once.  I am also positive we would not have had funds out of pocket to pay for work on 21 teeth and wait for dental insurance to reimburse us as Pensacoka said the case would be.  So thank you God for our wonderful hospital in Dallas and all they do for us!  Thank you for their eagerness to help us and their accomodations and for their Crayola Care Financial Assistance that means we will never pay more than 1% of our total income (if anything) per year.  When the orthopedic surgeon in NYC referred us to Dr. Sucato at TSRHC, I was slightly offended.  I didn't fully understand why he wouldn't take Clayton as a patient.  But I trusted the journey and I am so glad I did.  This hospital is such an all-encompassing kind of blessing.  I think too often people feel like they have to settle when it comes to medical care.  They have to do what's easy or close or what they THINK will be the easiest financial solution.  That is a myth.  Do not sell yourself or your kid or anyone you love short.  The right path might be slightly more difficult, but I can tell you from experience it is worth it.  We deserve top notch medical care and we have the right to seek it out were we see fit.  Don't ever settle when it comes to medical care.  It is way to important.  Don't be scared of the financial aspect either.  We have paid more to Sacred Heart than to either TSRHC or Sloan-Kettering.  Who would have thought, right? (But yes, traveling costs and can be it's own strain)  But we love all three places.  But most importantly, God provides for you to follow the right path if it's meant to be.  That is our experience.  So please don't settle; and be scared of the unknown and unfamiliar if you need to be, but don't let it hold you back.  Have faith in the journey God is sending you on.

Back to Dallas...it started snowing while Clayton was in surgery and didn't stop until nearly nightfall.  And while we were suppose to be discharged Friday afternoon, with the weather the hospital let us stay inpatient an extra night.  Even my mom and nana stayed.  All four of us in one hospital room.  But we survived the night and monitored the weather trying to find just the right time to leave if and when it came.  

We all three agreed our best chance would be to leave Saturday morning after sunrise and the city had salted/sanded the roads overnight and before the icey rain they were predicting late Saturday morning..  Temps were still below freezing, so there was no real melting yet, but we packed up and headed out around 9 a.m. (I drove).  So glad we did because this came in right behind us...

It was slow moving for the first hour as we navigated the icey roads, and then smooth sailing.  We made it home!

The whole trip was a HUGE success.  It is a miracle that we made it there and back and managed to get everything done between the winter storms.  And then to get ALL his dental taken care of in one go is a God send and a HUGE weight off my shoulders.  We are checking off our lists: stent replacement, check; dental, check; check in with Sucato, check; cancer scans and port removal...almost (March).

The dental was crazy though.  We expected them to work on four teeth for sure maybe 6.  My largest guess would have been 10.  We never saw 21 coming.  Poor bug handled it in stride.  He was definitely mad at me when he woke up though.  He also has continued to need Tylenol since the procedure.  He noticeably doesn't feel good when it wears off.  Hopefully, Monday he will get to drink from his kanteen again.  Until then, we have to hydrate him with a syringe by mouth.  And he can only have soft foods until that time too, which means getting slightly creative.  The dentist showed us X-rays and pointed out the sure signs of radiation and chemo damage.  Clayton is even missing a permanent tooth behind a primary that didn't form.  We'll have more dental later no doubt. But for now, we're done.  You can see his swollen lips and a little bit of a stainless cap here...stainless caps are all on molars.

That's all for now...I'll talk about his back later.