A Slice of Heaven Served up With a Side of Hell

Excuse me while I scream.

We were back in the doctor's office tonight.

Kean has, yep, two more ear infections.

His third set in a months time.

Who knows if they are the same ear infections that never cleared up.

All I know is he's miserable.

Those are his toes sticking above his shoulder while we waited.

 He's on antibiotic number three (a stronger one for a longer time).

and we've been ordered to see his ENT.  Today's doc suspects

an underlying sinus infection is to blame.

Well at least we had a few days break.

We went up to Sun Valley for the weekend-- mostly

so I could testify at a hearing on behalf of Camp Rainbow Gold.

They are trying to build their own camp on a pristine

piece of property up a canyon.

Unfortunately, the uber rich neighbors don't want it in their backyard.

 It was a long, long and depressing experience.

It's a good thing we made up for it in fun the rest of the weekend with the family.

The snow was unbelievable-- cars and homes buried.

 We saw signs of avalanches everywhere-- even Baldy,

the big ski resort was closed down for a few days while they

set off charges to trigger avalanches.

We spent one day with our favorite Camp Rainbow Gold counselor,

Jaime and her family.  The girls couldn't get enough of her

little baby, Maeve.

 She took us up this amazing sledding hill...

 where, I'm not sure if we talked more or sledded more.

 That night we all relaxed at the hotel.

 On Saturday, we took a leap and got Byron back in skates and on ice.

The last time he tried skating, he skewered his leg, got a metal plate,

10 pins and was on crutches for months and months.

 He said it was playing with his mind-- but after a few minutes

he settled in and boy, did we have fun.

 Kean sat in that little chair for a whopping 1 and a half hours

while we took turns pushing him around.

 He was in heaven.

 Hopefully, he's hanging on to all those fun memories while

he feels so lousy.

Poor kid.

The "Sorta" Test Results

I've had so many of you ask if we got the results from Kean's

testing on his seizures.

Well, kinda.

We don't meet with the Neurologist for a few more weeks

but Kean's pediatrician called on Friday to say while he hasn't

gotten the official report, he did not see anything scary.

However,  (and geez, doesn't there always have to be a however with 

this kid), the sleep study showed his heart stopped several times

during the night for short durations (over 2 seconds is all I know).

So guess what?!?!

We now get to add another new doctor to our stable.

Lucky us.

We are hoping it is no big deal.  But for a kid

with his health history, we don't get to skate.

Kean's new Cardiologist ordered a heart monitor harness

for 24 hours- Monday onto Tuesday.

That's Nicholle, Kean's therapist helping

me hold him down so the technician can
put the sensors in the right spots.

 Surprisingly, it wasn't too much of a battle.

And he didn't fight it quite as much as I expected

at home.

The night was a bit rough (he woke up several times

to tell me "off").

But we completed the test without having to re-attach

any of the sensors.  So that's definitely a win-win

in my book.

We turned it all back into the hospital yesterday.

And now we all wait.

We see his new Cardiologist on January 12th.

Stay tuned.

The fun sure never ends, does it!

The Results Are In...

Today was our big follow up testing at the cancer clinic.

I'm such a chicken.  I really didn't want to go by myself

in case the results were discouraging.

So at the last minute, my friend Colleen Riggs went with me.

She has always been especially cute with Kean.

 In fact, I think he has a little bit of a crush on her.

Anyway, here's the news-- my mama's intuition was right on!

Kean's white blood cell counts were back within normal range.

Of course, I've shaved off a few years of my life worrying

and the doctor isn't sure why- but we will gladly take it.

(And run.  No more testing!).

Every time Kean gets his blood drawn at clinic, he gets

a duck.  We got a good laugh over this one today.

Colleen christened him "Fabio".

Fabio Duck is just one of 80 some ducks in Kean's collection.

 Sunday night we had a grand time with this gang.

We met Brennyn (plaid shirt) four years ago

at the BSU Dance Marathon.

The football team usually shows up to build morale and give the students

dancing all night for St. Luke's Children's Hospital a shot in the arm to keep going.

Brennyn and Reese tore up the dance floor-- he mostly flipping her around.

It was so cute.

So he automatically became her favorite dance partner for the next few years.

Rob (in the black shirt) became our other dance buddy a few years ago.

And Kendra is the one Kean latched onto the other night

and didn't want to leave.

They all came over for dinner, dessert and a little cut-throat competition-

playing our new favorite game:  Cover Your Assets.

Rob smoked everyone!

Ah, life is good to us.

Decision Day

How can this be?

How can so much time have passed since my last post.

I'm a slacker for sure.

Actually, things have been crazy busy.

I just got back from meeting with our Baldapalooza Executive Director

and some of the key staff at Camp Rainbow Gold.

We are not doing a big Baldapalooza event this year

but we are producing some of a huge Camp event this fall

that is gonna be "epic".  Trust me.

 I snapped this picture of Kean and Reese waiting for the bus this morning.

I think I left a lot of you hanging with our last blood work nearly a month ago.

One of Kean's white blood cell counts is sky high.

We've spent the past few weeks consulting with doctors,

running some tests and finally last week, I threw down the towel

and said we would stop all the testing until February 29th (next Monday)

when Kean goes back in for his regular screens and testing.

I feel like we need to see if it was a fluke (hopefully) or if we are 

heading in a higher or lower direction.  That way we can be more

educated and strategic in our testing.

So tune in next week for decision day.  

Geez, that sounded like a plug for the elections.  Yuk.