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

"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 ago...you 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. Dental...work 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?

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 :)