The Swinger

I don't know where she gets it-- certainly not from me

(my own mother says I run like a newborn calf).

But our eldest is an athlete!!

She's been running track this season

and has done better than average but over the weekend

she pulled out a surprise.

 At the last minute, she was pulled in to run the 4 x 100 relay--

she's never run a relay.  And get this, they came in 3rd in Districts and more

importantly, she loved it!

Way to go Holland.

 I went to Kean's Kindergarten Mother's Day Tea

on Friday.

 He has a new classmate- actually a little girl we've known

for years from therapy.  Mika is also blessed with that

extra chromosome.  

 She's ahead of him socially and scholastically

(guess 3 plus years of Chemo do have an impact)

but it is fun to see them together.

 The children sang a song for the moms (Kean clapped at the end--

better than nothing, I say).

 We had treats together and even made a craft.

Love this boy.

 Then we headed up to the cabin in Cascade.

We are all about done with the big remodel-- the

laundry room is the last hold-out and we are getting there.

 We even got ol' Byron to take some breaks and cut loose

on the swings at the park.

 No joke, Kean stayed on the swing for at least 45 minutes

and would have stayed all day if we would have.

 We had a yummy Mother's Day weekend with Greer

leading things in the kitchen.  That girl can cook!!

 We wrapped up the weekend with a rousing game of Charades.

Trust me, you haven't played Charades until you've played with this guy.

Hope everyone had a relaxing and loving Mother's Day weekend.

Back In the Saddle Again

Blue skies and bearable weather (actually beautiful weather)

means it is that time of year again.

Time for Kean's Hippotherapy sessions.

 We even have Clark joining us...

to not only lead the horse but more importantly,

help keep Kean in the saddle.

You should have heard our boy giggle non stop

when we started trotting.

Not sure he was laughing with glee at going bumpity bump

or laughing at Clark and I trying to keep up.

 Holland has some big news-- finally, finally (she's been 

excited about this day forever), she got braces.

 Her mouth is a little sore but so far, so good.

 We also had Kean's second session with  the Neuro Psychologist

at St. Luke's.  If you remember (from my past rants), the state

is requiring Kean have a lengthy IQ test to make sure he

is still eligible for therapy services (read still has Down syndrome).

 Dr. Deidrick is one of the good guys.  She thinks this testing

is as ridiculous as I do-- but has slogged through getting 

Kean to cooperate (with lots of breaks).

 And she thinks she has enough for him to pass (or fail)

depending on how you look at it.

Yes, he will qualify for services again.

 And finally, after spending the day at the hospital, I got  to

spend the evening with Miss Reese.

Our church held a Luau for the girls around Reese's age.

 The party featured a yummy dinner, hula lessons,

 a hula performance for the mom's,

 games, the limbo and lots of fun with friends.

It was the perfect way to unwind and relax after such a long day.

Birth Control

Holland's teacher is either brilliant or a villain.

All the kids in her Health Occupations class have brought

home these mini terrorists.

 The computers inside have them crying at all hours- day and NIGHT!

And did I mention loud enough to wake up half the house.

Holland has a set of plastic keys-- she has to insert

into the computer to stop the baby crying when she needs

her diaper changed, burped, attention or to eat.

 There's also a panic key-- that if you get sick of it (or go crazy

from the lack of sleep), you can insert.  But that also means you

fail the project.  I learned today the mother of one of the girls

in Holland's class used the dreaded panic key.  (So don't blame her)!

Anyway, here's the beauty of it-- the experiment comes with

the added bonus of birth control.  Doubt any of these kids

will want to fool around after taking care of these half pint monsters.

Hodge Podge

Now that life is back to a more "normal" dull roar,

I've slacked off on keeping this updated.

So sorry.

Here's a quick run down of this past week's highlights.

We dropped Holland off (in her suit) and suitcase in tow

for a few days downtown at the state HOSA competition.

Don't worry, I'd never heard of HOSA either.

It stands for Health Occupational Students Association-

basically a club and competition for future health professionals.

She had a blast-- it was just kind of weird for us to have her away.

 And now that Kean's health has improved and he's getting his

energy level back up, it is time to get him back into regular

therapy.  He had his first Physical Therapy session in a pool.

 Every other week he will have therapy with one of his

former P.T.'s at a pool in the basement of a building over

by St. Al's.  

 My favorite part- I'm not so sure it was his - was when

she placed him in this contraption.

It is just a floaty but it buckles twice behind his neck and keeps

his head up while keeping his hands and legs free to flail

and kick.

 I think it was a little disconcerting for him in the beginning

but he soon was all over the place- acting like he owns the pool.

 Finally, my cute 97 year old grandmother was interviewed

by one of the local newspapers (Middleton) about her legacy.

Have I told you I'm one of 83 grandchildren!!!

Around our house, most of the time the girls don't call

her Grandma Great-- it's Grandma the Great!

And that couldn't be truer.

She is truly one of the wonders of this world.

Cancer: the Gift That Keeps Giving

Oh do I ever have a lot to catch up on.

There just hasn't been time.

Last Thursday, we had another one of Kean's big post-Chemo

check-ups.  It is hard to believe it has already been a month.

Even though we don't really have "Chemo" dates anymore, Kean

still had two babes on his arms.

Holland and her friend from school, Lauren came along

(to interview one of the Clinical Dietitians for a school project).

 It was so nice to have "Hottie"  (Kean's version of Holland)

along with us.

She must have been a good luck charm.

We finally had no problems drawing blood from the boy.

 We saw Kean's primary Oncologist- Dr. Camilo

and he has no idea what it causing the awful, itchy rash

on the boy's head.  Everyone seems to think it is either a

virus or a reaction to a sulfa drug Kean has been on for three plus

years (and is supposed to keep taking until the end of the year).

We also set up a bunch of sedated testing on Kean's heart.

Get this, one of the Chemo drugs he was on causes heart damage.

And the possibility of the damage doesn't lessen with time-- he

will have to have his heart tested regularly for the rest of his life.

That #$%@ cancer-- the gift that keeps giving!

 On to better news-- Holland's school put on a big

Haunted House.  Holland was recruited to be a scary doll 

come to life.

And let's see on the school front, we've been pulling Kean

our of Kindergarten each Friday to keep his intense therapy

(OT, PT, and Speech) all in a row.

We had our big yearly review.  Kean for the past month

has 1.  been exhausted for all of his therapies

and 2.  has made it clear he does not want to be there.

So we have decided to take a break and call off these

therapies to hopefully get his energy level up and to find a better day 

in a few months where he can be around more children at his level

(the kids who are there on Fridays are very delayed and that has 

only added to his frustration).

Let's face it, after three plus years of house arrest-

this boy is ready to be social.

And he was all smiles as he said goodbye to his

therapists.

 And finally, I will be trying to get ANOTHER doctor's

appointment tomorrow with a Dermatologist

to look at Kean's rash.

 I don't know that it looks worse tonight but it is certainly

more itchy.

We were up at the cabin for the weekend and

poor kid woke up every two hours to protest

and let us know he wasn't happy.

I'm done with this waiting game and trying 

to keep him calm while it clears up.

Three weeks is too long!!!

So Good

Three days down and all is still good.

In fact, I swear he already looks and acts healthier.

His eyes seem brighter.

He no longer frequently grimaces in pain and he is talking up a storm.  

He even without prompting calls his

aid by her name.  Well sort of.

Her name is Mrs. Baker and he just calls her "Baker".

I don't know why I find that so hysterical.  But to think of

him throughout his morning referring over and over again to her as "Baker"

makes me laugh.

Greer made this poster for Kean-- of all his favorite things:

Maximus from Tangled, a motorcycle, bacon-- you get the idea.

He's coming home each day-- happy but completely exhausted.

 And Holland and Kean didn't set out today to be twins.

 But they somehow dressed alike- only Kean

wanted nothing to do with taking pictures.

 And everything to do with giving his "Hottie" kisses.

 Life is so good.
Oh yeah, and I almost forgot.
We were on TV again.
This time not about Baldapalooza--
but about vaccinations.
An interview we did a while back hit the airwaves today.
http://www.scrippsmedia.com/kivitv/news/Mom-of-chemo-patient-We-dont-get-that-choice-for-vaccinations-327848201.html

So This Happened....

How many of your remember that famous line

(uttered over and over again) from the TV show

Sanford and Son:  "I'm coming Elizabeth"!

That's how I felt today when I took Holland

to register for HIGH SCHOOL!

 Actually, it wasn't too tortuous.

Remember, she is going to that small medical high school

(the nerd school as we call it).

Anyway, it was great-- small, friendly, do-able.

It was when we had to stop at our neighborhood high school

and get her an activity card for sports

that I started hyperventilating.

I kid you not-- there were some boys there who looked

like they were in their 30's or at least running a prison gang.

And don't get me started on what some of the girls were

wearing....

Ladies and Gentlemen, Can You Say "MIRACLE"?

Grab some popcorn.

We had a huge, huge day

so this will be a long post.

Kean has heavy Chemo today-- his last one sedated.

It didn't start out too well. 

His "persnickety port" wouldn't let the nurses squeeze out any blood

until after he got a dose of anti coagulants. 

I must need to learn more patience.

But thankfully, it got better (much better) from there on out.

The lady in blue-- Fabiana Huffaker was our Chemo date for the day.

In my book, she's one of the top photographers around and a dear friend.

She spent countless hours last week shooting portraits of 20

cancer kids for our Hall of Heroes gallery.

And trust me, they are stunning.  

She brought her camera along today and took some

extremely touching pictures of our little warrior-- pictures I will truly treasure.

The lady in red (the red hair) is my friend Zoe - the head of special

events for the hospital.  We had a mini meeting in the PICU

while waiting for Kean's procedures to start and plotted out 

how we will redecorate the Pediatric Oncology Unit to make

room for all of the portraits and stories of these kids.

 And then finally, it was time to start.

His Chemo went smoothly.  He got two drugs today-- one in his 

spine and brain.  So glad to have this behind us.

His Oncologist can't quite figure out why Kean's hands

(and his feet and torso-- a bit) are yellow.

He ruled out jaundice, some other condition caused

by eating or drinking too much carrots, squash etc.

and then late this evening called to rule out Thyroid issues.

So the mystery continues. 

 Here's the exciting news of the day - though.

After they finished administering his Chemo, they kept

him sedated for another hour plus.

A doc from Elks Hearing and Balance came over to 

give him an ABR-- a sedated hearing test.

 When she was done, she said to me that in all her years 

she has never been able to tell a parent that their child

NO LONGER needs a hearing aid.

That is, until today.

 He got two hearing aids when he was quite young, then it was cut down to just

his right ear.  He has fought that blasted torture device since day one.

His therapists and Byron and I have always suspected his hearing

was better and he did not need it.  

And today, we had that confirmed and had our MIRACLE.

They told me early on his hearing loss was "conductive" and that 

there was a minuscule chance of it being corrected but

that rarely happened and to not get my hopes up.

I didn't get them up but I'll tell you I have been up in the clouds

today over this news.

Somehow, we made it home in time to drop Kean off with 

my friend Calene so I could run to Holland's Middle School graduation.

 I missed the awards ceremony this morning where she got

two awards and where Greer knocked it out of the ballpark

and sang I'm told a killer solo to the school.

 It was so fun to see Holland surrounded by her good

friends and so happy.

They are all scattering to the wind next year and going

to several different high schools.

Kind of a bittersweet day for her.

Bittersweet for her but sweet, sweet, sweet for me!