December 31, 2014

No Holidays For The Sick

Clearly Clayton's body has zero care for the fact that it is the holiday season.  If the only hospital visits we ever had were the ones for his renal, cancer or ortho, life would be so much easier.  Those things take so much away from us and him, but when you throw in viral infections or falls or whatever into the mix it is just too much.  ALL of these many hospital hours we tend to log are why it is so important for us to have good medical care.  It makes all the difference!
George has been sick and try as we might to avoid it, Clayton got sick too.  Which as it does nearly every time he gets sick, meant ER visits for us.  Yay! :(. This is why we stick to our bubble so to avoid midnight hospital visits.  Here's how the past 24 went...
I knew since the wee hours of Tuesday morning that Clayton was getting sick.  He had a slight croup sound to his cough while sleeping.  Watched him close all day, knowing what was likely coming.  Ate and drank fine and acted fine.  Little coughing, lite runny nose.  Went to bed last night still listening...sure enough it started.  So we gave him steroid around 12:30am, did inhalers; nothing seemed to change.  So around 1:30am we headed to Thomas.  Thankfully, because Clayton is well, as Clayton is, the triage nurse let us wait in a second triage room instead of in the main waiting area.  So awesome!  However, we waited...and waited.  During which time he got a fever of 102.7.  But as we waited for three and a half hours to get a room, his symptoms all began dissipating.  So literally when they finally came to take us to a room it almost seemed pointless to be there.  We decided to forgo seeing the doctor and go home.  We were tired and his emergent symptoms had dissipated and we weren't fond of the idea of another 4 to 6 hours in the ER.  Especially when we were already SO tired and Clayton was SO irritated because the hospital internet is worthless and won't play his videos.  We knew going home meant we would likely find ourselves in Pensacola today...and we did.  But we have been so impressed by them that it was a relief more than an inconvenience to have to go to another hospital.
Back to Clayton...During the hour before he woke he began to breathe a little noisier again and upon waking his cough sounded a bit like residual croup.  I tried to bring him to his new Peds office, but they had no appointments today and were closed tomorrow, so here we sit in the Pediatric ER at Sacred Heart.  Because here's the thing...we still felt like Clayton should see a doc for respiratory reasons with his history, but we would have likely had to come to the ER no matter what for them to do blood cultures  on his port since he had a fever.  Fever with port = mandatory blood cultures.  Also, fever with ureter stent = needed urine specimen.  All to be sure none of these foreign objects are causing infections.  Basically once the fever happened we were destined to be in the ER.  Again I have to say how much I adore their pediatric ER.  We had a room within 15 minutes of being here spoke to someone within another 10 minutes, had a plan, got stuff done and the only reason we are still here as I write this is because we need his CBC and BMP blood results before we head home.  They take an hour to come back.  
Such a pleasant experience though; especially since this is my first ER visit without George or my mom.  Well, me and the kiddo flew solo in NYC ERs a couple times, but that's different.  I always have Clayton's essentials ready to go, but it helped a lot today having time to pack extra juice and food and such.  We both threw on our pjs and hit the road.  No point in dressing up to sit in a hospital.
Anyway, we are waiting to head home, shouldn't be much longer.  I did just find out he tested positive for the flu.  And based on the CDCs reports on the effectiveness of the flu vaccine this year, no it does not change my mind about giving it to Clayton at all.  If I had it to do again, I still wouldn't give it to him.  Shoot even if I had, we would likely still be in the same spot we are in today.  I'll come back in another posts about my vaccine findings and what my preferences will be, but for now I can still say I am not a fan of the flu vaccine.  In previous years, the flu vaccine did not agree with him and so I think it best to abstain from that particular vaccine due to his history with it.

December 26, 2014


We got to have a mostly peaceful Christmas at home!  Clayton really got into Christmas this year.  The whole Santa and Christmas morning thing clicked with him.  Only problem was he wanted to unwrap EVERYONE's presents for them...with them, without them...made no difference to him.

I think Clayton had a nice modest Christmas.  We try to keep to our minimalist concept as best we can, and at the very least, we try and keep to small items.  But he doesn't care and still gets little goodies and is good to go.

That's not a new ipad.  Same 'ole ipad new cover.  He honestly loved all of his gifts.  Especially Planes Fire and Rescue that Santa dropped in his stocking!  I feel like our TV could play the movie by memory now.  Of all of his toys from us, Santa and family, the only one he hasn't paid much attention to is Sully.  Which I was surprised by.  But he goes through phases and Sully will see his day soon.

I'm vey excited about his only "big" gift.  A playground!  So technically the swing set was a Christmas gift the year he was diagnosed with cancer and he got his table and chairs a few years back to from his Aunt.  But this year, my parents went in with George and I to make him an area in the backyard that is his.  No dog poo or cat poo or chicken poo... You get the point.  He always likes to lay on the ground with his toys and grass can make him rashly plus the animals all poo everywhere and we were constantly on high alert for animal crap.  Now he will have a clean, soft (impact absorbing) area to play to his hearts content!  So happy for him.  Better picture when it stops raining.  It's railroad ties and pea gravel for those wondering.

Especially because with germs we often avoid public parks, so now we are giving him his own haven in his own backyard and it's his for the playing whenever.  That's kind of our thing...creating a haven for our family.  Life with Clayton lots of times keeps us secluded and I think that translates into the importance of creating a home that truly has all you need for those times when it's all you have.  We have been incredibly lucky.  My parents allowing us to build on their property has given us a place that provides in so many ways.  My mother's house is nearby which serves as an amusement park in its own right to Clayton and let's him get out of the house here and there; George can scratch his hunting bug on those days he needs to be nearby by strolling the property or stalking animals in the back clearing; our neighbors (who were like my second parents growing up) have a pond where George can fish or train with Macy;  I have our little budding homestead for myself; and now Clayton essentially has an outdoor playroom to laugh and play in to his heart's content.  Even when it seems like everything gets flubbed up all the time, sometimes the "big" things just work themselves out as though they were meant to be all along.

As for his head and the subdural hematoma, the neuro surgeon said it should be fine now that we are past the first 48 hours, symptoms could persist for a few weeks, but he does not feel anything more serious will occur at this point.

December 23, 2014

Home For The Holidays

Good news!  The neuro surgeon reports that while it is a subdural hematoma, it is a small one.  We stayed overnight for observation and the neuro surgeon has no problem sending us home today provided Clayton continues to act himself.  He felt the first 48 hours were the most important for monitoring purposes.  He also said we did the right thing monitoring Clayton as we did the night following the fall and bringing him in when he began vomitting the next morning.  So hopefully home today!
In other good news, we were thrilled to learn that Clayton's creatinine has dropped slightly over the past week.  What this means is that Clayton's dietary changes and the blood pressure medication are buying us time just as the nephrologist had hoped it would.  His kidney is by no means fixed nor can these changes ever "fix" his kidney.  But his kidney did react to these changes and therefore it seems we have a bit more time to get our ducks in a row.  We are talking about time such as doing a nephrostomy tube in maybe a month verses a week.  So the end goal has not changed.  The kidney is still not going to last us as long as I once hoped, but we have just a little more time if his kidney continues to respond in this way.  However, his kidney could stop responding and trend in the other direction once again at any time.  It's all just wait and see...still.  Check back with docs on this in a week.
Let everyone know if and when we get home today!

With love,
Clayton, Sven and Olaf

December 22, 2014


The randomness that is our life is astounding.  I can't believe the crap that happens to us.  I mean really.
So yesterday my niece and nephews, Clayton and myself were at my mothers.  I walked back to my house and 10 or 15 minutes later got a call they were bringing Clayton down, he fell and wasn't acting right.  Clayton and my nephew were on the bottom 3 steps at my moms playing individually.  Clayton got excited (as he often does) and grabbed my nephew and they lost their balance falling down the bottom 3 steps.  Clayton actually landed on my nephew, but somehow managed to hit his head on my nephew's chest hard enough that he was showing symptoms of a concussion.  We monitored him last night, but he seemed to narrowly avoid the red flags that would have sent us to the ER.  This morning we headed to Nemours for our weekly visit with his nephrologist. And Clayton began getting nauseas on the way over.  Again as we got out of the car for our appointment he began vomiting.  So we loaded back up and drove to the pediatric ER on the other side.
In an hours time, he was hooked to fluids, had his port accessed, had a CT and X-ray done, labs drawn and the doctor was in to tell us their findings.  Love their efficiency and pure awesomeness!
The conclusion is that he has a subdural hematoma.  They are admitting him overnight and doing another CT tomorrow.  The neurosurgeon said he does not think surgery is needed.  Be back later with more...

You see what I mean though?  How do these freak things keep happening to us! The whole thing is quite unbelievable.

December 18, 2014

Be Positive...Get It?! :)

The thing about waiting and sucks.  On the one hand since all this news came about, I have been trying to prepare for the days when Clayton and I won't be home.  On the other hand, I have also found myself trying to go about my days as though nothing will change.  Trying to forget about it if you will.  I hate having to do either one.  
Generally speaking Clayton has been good this week.  The blood pressure medication is already helping withs his BPs and he's adapting fairly well to his diet changes.  He goes in and out of spurts of energy and those of rest.  It is hard for us to tell though if it is related to kidney issues or his back or what.  Last week he seemed to have swelling in his face in the evenings and since making our changes this week, I have not noticed the swelling and he also seems to be peeing better during the day.  Both are good signs that the changes are hopefully buying us that time through the holidays.  We see docs and do labs again on Monday.  Bring on the prayers!

Thank you to all of those who have already volunteered their lovely kidneys to Clayton!  I am not yet sure when I will learn more about how all of that will work.  There are so many things yet to figure out.  I can say this though for all you eager donors.  Clayton's blood type is B+ so any donor would have to be a compatible blood type.  I am pretty sure I am a match.  The only problem is that I have had kidney stones and my father has a history of renal cancer, so I am not sure if they would consider me an acceptable donor.  There are lots of stipulations to being an acceptable donor.  Weight, blood pressures, history of diabetes, history of cancer, history of kidney stones and even a history of psychological issues can all lead to a donor being turned down.  So all of this will be quite the process.  Step one will be to see if I would be an acceptable donor.  In which case if I am, who's taking care of me and Clayton post op?  Should be interesting.

P.S. my last post was not me dropping a hint about wanting a mani pedi.  I do NOT want one for multiple reasons...Mom.  I was only making a point.  

December 16, 2014

The Elephant On My Chest

Days like yesterday leave me feeling like someone or something...maybe an standing on my chest.  Aside from being emotionally spent, I literally just feel this huge weight.  It's all a horrible cycle.  Clearly I'm not afraid to go above and beyond for Clayton.  Been there, done that.  But at some point I get hopeful that there will just be peace.  And then we find out his kidney it progressively moving in the direction of end stage renal failure.  This was our number one concern since he was in utero.  BUT then he got cancer, his scoliosis got worse, he began having respiratory concerns, etc. and we thought maybe that kidney will keep kicking.  It was doing so well.  And had made it through so much. After all, weren't all those challenges enough?  Couldn't he get a "get out of jail free" pass in the kidney department.  
Of course not.  That would be too easy...and well, easy just wouldn't be our style.
Then after confirming and clarifying things yesterday with the doctors, I am of course thinking of Clayton, but I start thinking of me too.  I lost my social life long ago...about the time Clayton was born.  I've lost touch with my girlfriends from grade school and college.  I rarely ever do anything for me.  No manny-pedis or movie nights or music concerts or football games or casino visits or whatever else folks do for fun these days.  Even gave up my chance of having a career.  And all of that was ok.  I adapted.  I'm a chameleon like that.  I changed to better suit my life with Clayton.  Even building ourselves a small house in the country, getting some chickens and building a dream of being a homesteader.  And I LOVE it.  Every. Single. Bit of it.  It is a life that without Clayton I likely would not have.  Clayton leading me down this path is the biggest to him of course.  I LOVE my life and wouldn't trade it.  I relish in the joys of living simply.  I adore learning and practicing lost skills that so many of our grandparents practiced and so many of my generation and our parents have brushed to the side.  I love feeding my chickens every morning, checking for fresh eggs, watching my chickens (hilarious), watching the pup and the rooster play ( oh yes...even more hilarious), planning my gardens, canning, making my own homemade peanut butter or almond butter or bone broths, finding new ways to cook whole foods, learning to process our own meat, learning to make the most of the land we live on, respecting the land we live on...all of it.  It is my life.  I love it.  I am beyond blessed to have it.  I wouldn't have it any other way.  I am truly learning to embrace what is important and disregard what really doesn't matter.  Why this spill about how I love my simple life?
Because when learning what is coming, I think about Clayton yes...But then I think about me.  I think about again being ripped away from this life I have built and being once again displaced in another city, our family again split up and ripped away from my lovely little life I love so much.  
And then I feel like a jackass for being so selfish to think about myself that way.  And then I justify it to myself saying better to think selfishly than act selfishly.  And then I just feel like a jackass again for trying to justify my selfishness to myself at all.  And it just becomes this anxiety ridden cycle of feeling devastated, selfish, guilty.
For some reason I just feel like we've been through enough to the point that there should be an end to it all and yet there never is.  It just keeps going and going.  And I'm not talking about little things like doctor visits, labs or even trips to dallas.  I'm talking about big things.  It was major kidney stuff when he was born and for his whole first year and a half.  Then cancer right after his 3rd birthday.  Then a massive orthopedic undertaking right before his 5th birthday and now right after his 6th birthday we are back to major kidney stuff.  And of course there are the autism challenges and respiratory issues amidst all of the above.  This all takes a toll on us as a family, but there is also a huge toll it takes on each of us as individuals.  It does take a lot of effort to be a family when there is so much time to grow apart being strewn out with hundreds of miles between us for extended periods of time, but I think there is also a question of the effort it takes to stay sane when you constantly feel like you are losing yourself to having to fight another health battle.  We keep trying to move forward together and individually and we keep getting set back.  It's like George going back to school to finish his four year degree.  He just got started this fall and now this.  But we are going to press on and try like hec not to let this deter his end goal.  It's hard though.  When there is constantly something working against you trying to hold things together or find progress amidst the chaos, keeping your sanity even partially intact seems nearly impossible.  And I've said before it can be hard watching others move forward in their lives when you feel like your just stuck all the time.  It feels like crap, if we didn't have our challenges we could be doing those things to.  But we do, so we can't.
I try like mad to think of the wonderful blessings we have.  Like our house.  That is a HUGE accomplishment.  George is just over 30 and me just under 30 and we have already built our own house ourselves.  That is massive.  And having had the timing work out so perfectly that we had the opportunity to build it between our ortho problems and our kidney problems is such a blessing.  We also got Clayton a puppy in July.  Without siblings and much socialization, he desperately needed a companion.  And the timing between getting in the house and our kidney problems again worked out to be such a blessing having given us time to have her go through her puppy months with me and Clayton around all the time and get her house trained before she is left alone with George all the time while Clayton and I are away.  So we have gotten to move forward is some ways and I just keep trying to think of those and stay positive.  And appreciative.
This non-stop fight-for-your life roller coaster we seem to be on often just leaves us feeling like everything is closing in.  Like we can't do anything right and are constantly failing.  Like we are very alone.  Like we are selfish as individuals for thinking of ourselves and our wants when Clayton's life is all that matters.  Like there is no end. No peace.  And we can't really do anything about it.  Elephant on my chest or pains because my heart hurts...doesn't really matter.  We have to keep waking up every day, putting on our big kid underpants and saying (with varying levels of confidence) "We got this".

Always looking for the light through the darkness...

December 15, 2014

Stage 3 Kidney Disease and Counting...

So I met with two of our doctors today and did labs.  Clayton's creatinine has again risen just slightly.  However, given that it has risen even ever so slightly in a week, the doctors are concerned.  Right now we are buying time.  We are trying to make it through the holiday without a nephrostomy tube.  Though a nephrostomy tube will not be an answer, it will allow us to see what Clayton's kidney is doing without the chaos of the messed up ureter.  This will give us a true reading of his kidney function.  Right now the ureter could be skewing things just slightly due to inadequate drainage; which is a problem we have been trying to work with doctors on.  The doctors did say definitively though that they did not believe the progression in kidney disease we are seeing is due to that.  They believe it is the kidney.  Clayton is also hypertensive. So I have to monitor and record his blood pressure daily and report to doctors and he is now starting medication to address this.  The problem with blood pressure is that it is a byproduct of deteriorating kidney disease and yet it can also cause a kidney to deteriorate more quickly.  Lots of balancing.
Let me think... To much information swirling...we will check in again on Monday with nephrologist and urologist.  They hope nothing will happen before then, but said it is always a possibility and told me just to come right in if I notice any changes before then.  It is 99% certain Clayton will be getting a nephrostomy tube in the next month, it is just a matter of when.  Could be next week or could be after Christmas.
The doctors are trying to work things out with the doctors in Orlando they want to get them prepared for Clayton and I am waiting to hear more on that.  They ruled out the possibility of dialysis for Clayton for multiple reasons.  Which means if Clayton's kidney fails we will be looking to a kidney transplant.  They talked about getting Clayton established with the hospital so that they can get him put on a list for kidney transplant.  They said they can, "get him on a list for transplant consideration", in about a month.  Research shows what they must have meant was a preemptive transplant knowing he would not be a candidate for dialysis once he reaches end stage renal disease. So depending on when he could find a match, he could have a transplant in the next 6 months...or less.  After speaking with the doctors today, I expect we'll be making a trip to Orlando in the next 3 weeks.
It's a lot.  George and I had thought we might have a few more years before any of this.  

So here are the facts:
- He is currently in stage 3 kidney disease and still progressing.  Kidney Failure occurs in stage 5.
- Kidney function can be measured by numbers; normal function would be in the 90s, Kidney Failure is in the 30s and Clayton is at 58 and falling...per our nephrologist.
- He will definitely get a nephrostomy tube in the next month.  Not sure just when.
-  he will soon be going on a list for transplant consideration per the doctors today.

I have to say though, today was a good day with doctors.  I was able to sit with both doctors and pow wow.  The beauty of being such a serious patient is you get their undivided attention.
That's all I have for now.  Tired from thinking about it all.
One request:  please for the love of all things do not be one of those people that hugs me with the expectation we are going to hug it out and cry and such.  Don't get me wrong, I'm good with hugs, but my tears are mine and I have zero desire to share them with my mom or my friends or grandmas or anybody else.  I tend to work things out when I'm by myself and I hope everyone can understand that.  I'm good with hugs, I don't mind casually answering questions about everything now, but no heart to hearts.  I'm a weirdo and that's just how I roll.
Despite my weirdness, please know I don't mind a normal hug, I love hearing everyone's sweet thoughts and prayers and I am constantly touched knowing how many people keep my sweet boy in their hearts.  So don't think I'm brushing folks  We want y'all and need y'all around us, I just want to be left alone when I'm having a bad moment or a bad day.  It's me...not you :)

I'll be back when I know more or can better process my thoughts...

December 12, 2014

Changes Are A Coming

Clayton's kidney disease is progressing.  For years his kidney disease has been stable except during those times of chaos during stent procedures or chemotherapy aftermath.  That poor kidney has made it through so much.  And despite what we knew to be true in the early months of Clayton's life, George and I had hoped that kidney would last him a lifetime.  Unfortunately, his creatinine is beginning to rise and his BUN and potassium levels are elevated.  His blood draws from right before Thanksgiving alerted us that something was off and then a routine ultrasound followed by another set of labs confirmed this.  We have a number of doctors to meet with about this and more labs to do.  
We have NO details right now about the future.  We have no idea how quickly his kidney disease could continue to progress.  Some people's progresses over months and others over years.  Clayton has a lot working against him.  All we know is this...
We will be trying to have any major surgeries done at Nemours Children's hospital in Orlando.  We love Nemours in Pensacola and would like to keep it in the "family".  It is easy for doctors within Nemours to communicate and organize Clayton's care.  Major surgeries that could result in complications leading to dialysis or transplant cannot be done in Pensacola.  Yes, there will be a major surgery in his future.  We don't know just when, but in light of recent events possibly sooner rather than later.  When I say sooner the best estimate I can give is possibly within six months.  Could be weeks or months.  I don't know. I know the doctor in Pensacola hopes to do weekly labs and get us through the holidays, but we have no idea what Clayton's body will do.  I am monitoring his blood pressure and other stats from home to help alert me to any abrupt changes.  And we are watching his diet.  Yes, his diet.  Diet can be a big deal in helping not to aggravate kidney disease.  No more bananas (because of potassium).  We know that his kidney function took a bad turn between his labs at the end of September and those at the end of November.  The good news is that his creatinine stayed stable between November 24 and December 10th.  We have no idea where things will go from here...Just watching and waiting.

On a positive note, we have been immensely blessed with our urologists in this area.  First, Dr. Terry (he was retiring slowly so we switched) and now Dr. Wehry.  Both of these doctors personally call me on he phone and talk to me.  I remember being in labor and Dr. Terry coming to the delivery room to check on me.  He was at the hospital waiting on Clayton. Love.  The man even gave me his cell number and missed part of a vacation one year to help Clayton when he had his hemorrhagic cystitis.  And the past two nights Dr. Weary has personally called me on the phone to discuss Clayton.  Not a nurse, he himself called.  Which he has done on other occasions as well.  These men are just the best kind of doctors there are.  

That's all I know for now, I will update as I know more.  

To our family:  This is your update.  I know many of you might not like it, and I'm sorry.  Kind of.  I don't want to talk about this beyond what I put on here.  I know y'all will have lots of questions and I have tried to make it clear on here I have no answers to anything right now.  Please respect my right not to talk about this.  I am very aware that this might be hard for y'all to understand or upsetting for y'all.  This is incredibly difficult for me and my way of dealing with it is to not have to explain things over and over or stress again and again that I just don't know about things.  I don't want to speculate what the future may bring with anyone.  I am giving people what I know here and I hope that can be enough.  It is all I have to give.  We love y'all.

Bottom line: Clayton's kidney disease is getting worse.  There is hospital time in mine and Clayton's future and probably a few trips to Orlando (consults, surgeries, etc.).  Clayton had a little break and his life is once again going to get complicated.

Please pray this ridiculously sweet boy can have a peaceful Christmas at home!

December 10, 2014

Ultrasounds and Labs Oh My

So Tuesday we went to the doctors for an ultrasound of his kidney and for labs.  I paid $208.65 for the ultrasound and later paid $45 for his inhaler.  To which I say Obama and insurance you both suck!  Seriously.  Your both lousy!  The sad part is we are suppose to have good insurance.  Aaaarrrrgggghhhh!
However, I will end this with the ridiculous cuteness that is my child...

Still having trouble with videos...soon

December 2, 2014

"Those Days"

Today is one of those days.  Those days where every time you turn around you can't help, but be like "seriously?"  "Is this for real?"  Knowing that YES, this is for real.  Life with Clayton really is this are-you-kidding-make-me-jump-through-hoops kinda life.
It all started with teeth.  As previously explained we knew Clayton had a couple teeth that needed fixing, so yesterday we went to see a local dentist I grew up with.  She confirmed what I suspected and referred us to Dr. Trey who has all the bells and whistles for fun and function as everyone in the area knows.  Dr. Trey's is like a local funhouse.  I dropped Clayton at my mom's after to run an errand during which point he was proudly still toting his green "Dr. Trey's" balloon which instantly made my mom squeall with delight that Clayton got to go to Dr. Trey's.  You would have thought I took him to Disney.  Really though the man (Dr. Trey) is a genius.  Who wouldn't want to run a successful pediatric dental practice in downtown that everyone thinks is fun, fun, fun AND you get to drive to work on a golf cart...with your dogs...who just chill behind the office while you work.  Genius I tell you.  I digress...
This morning we made it to see Dr. Trey who is great, but unfortunately who let me know that he felt Clayton needed to have his dental work done under general anesthesia...again, unfortunately, Dr. Trey had given up his OR privileges so he needed to refer us to a dentist in Pensacola.  Which is fine, but since we went into Dr. Trey's thinking he was superman and realizing he wasn't quite equipped for Clayton's level of difficulty, it was one of those "forgive the look of shock on my face" moments.  So we left.  And yes it was an awesome place and I couldn't help, but wish it would have worked out.  Even Clayton acted like a kid in a candy store there.
On the way out of town, I call the dentist we were referred to in Pensacola during which time I learn that if we were to do any treatment there we would have to shell out all money up front and our insurance could reimburse us later.  A.  we don't have that kind of money B. I am not sure how long it would take to get our money back C. how much money would we really get back?  What kind of money am I talking about?  3-4 cavities/extractions worth plus general anesthesia.  Not going to work.
The last resort I could think of was Dallas.  Clayton's orthopedic hospital has an in house dental clinic.  Same one we visited about a year know when he didn't have any cavities.  And I know that the insurance, money, sedation side of things is all OK.  No questions asked.  Love.  Luckily, we are in need of seeing his orthopedic surgeon in the next 3-4 months which would make a trip worthwhile, so one phone call and a few hours later everything was coordinated and we were able to schedule things for January.  Ortho...check. check.  Two birds, one stone.  The hard way might work out after all.
So who drives 10 hours for their kid to get dental work?  Apparently we do because that is how life with Clayton seems to go.  Everything the hard way.  And while I continue to be astonished at how difficult life with Clayton can be, I try not to complain about it because bottom line is I am insanely blessed to call the little tornado mine.   Plus who can complain about dentist problems when there are real problems out there like cancer?

December 1, 2014

Decay by Chemo

So I can't say for certain that the chemo is to blame for Clayton's current dental problems, but I wonder.  I know it does cause problems for lots of kiddos.  I think we will be pretty lucky to just get away with a few teeth being pulled.  We'll know soon enough.  A year ago he had no cavities... Now he has bad decay on three baby teeth.  This is a kid who wouldn't eat candy to save his life.  George and I might not have been as on top of dental hygiene as we should have, but I still blame chemo.  When you have so many battles to pick, it can be hard to pick anything you aren't forced to.
We also did some tests the other week on Clayton's blood and kidney function.  The tentative game plan for his kidney is to do a stent replacement in January in Pensacola and our urologist there will have one of their Nemours colleagues from Orlando with them.  That way the colleague can get a feel for Clayton's kidney and ureter and help us to make the best long term plan.  It looks as though any major surgery for that might be done in Orlando.  Mickey Mouse!!!  (no time frame for any long term surgery yet). At least if we have to go through hell, we'll be surrounded by magic!  Looking for the light people.
On the vaccine front... One of the reasons I love our Nemours team is because when I was speaking with them about vaccines, they didn't dare try and push them on me and they didn't turn us away...instead, they said let's test his immunity and see if any further vaccines would even be necessary before we think of having a conversation about it.  Sounds like a plan to me!  They respect and practice my own pursuit of doing what is necessary and avoiding what is not.  Love.  So they drew the blood for the testing and we'll know in a few weeks.  Love that approach.  Love, love love.  I'm all about reason and compromise and protecting my sweet boy any way I can.  I just need to know as a parent, that the means are necessary and have to do with what his body needs and not with policies, politics, big pharmaceuticals, bottom lines or blanket solutions, etc.  Because my bottom line is what is best for him.  I just keep loving our Pensacola oncology team more!  
Like I said last time though, I hate having to leave his old Peds office.  They helped us SO much over the past 6 years and they will be missed.  I'm still disappointed in the situation, but I will miss them nonetheless.  Our new close to home oncology team helps fill that void though :)