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!!!

Wiped Out

Today being Friday, means Kean skipped Kindergarten

and went back to his old therapy school for three sessions:

OT, PT and Speech.

But before we went, we stopped by to see Motorcycle Jeff

at work.

His architecture firm is literally across the street from Kean's therapy.

 Seeing Motorcycle Jeff also means seeing Motorcycle Bill

(his boss).

 And it means going through the ritual of the ol' fist bump-- (the secret 

handshake of real motorcycle men).

Kean took the opportunity to show off to the entire office.

 Nothing like a few somersaults

to dazzle the crowd.

 Guess all that dazzling, all that working at therapy and

a long week of Kindergarten and big changes will wear

anyone out.

Look who didn't even make it ten minutes in the car.

We welcome the weekend!

A Hot Mess

I am so far behind on my posts thanks to how busy Baldapalooza

is keeping me.

I can't not document that we had our last day with our dearest Maureen--

Kean's Occupational Therapist.

She's been a huge part of our family-- been coming to our home

for years (since Kean was a baby).

 In fact, some of you may remember, Kean called Maureen

"Mama" at least twice before he said it to me.

And I was fine with that.  Maureen is very much like a Mom

to all of us.  Byron even christened her "Mama Gump"

after she had Kean put in leg braces.

And it stuck.  We all love our Mama Gump

and will miss her coming to our home each week.

 I told you Baldapalooza was keeping me running.

Friday morning, oh how lucky, I got to get up before the sun

and be at Scentsy, our venue, at 4 a.m. for 24 live shots

with the local NBC weatherman.

That's Elizabeth Lizberg, the head of Camp Rainbow Gold

(the organization we are raising money for).

 In spite of the vampire hours, we got a lot of paper work

preparation done-- and had fun with this group.

 Then it was run, run, run-- had to get Greer and Reese

registered and then... are you sitting down?

I had to go register Kean

for Kindergarten

at a new school. 

Okay, so it was kinda creepy that I was likely the only

parent in the school without a child by my side.

Even though school starts Monday, Kean won't go until

mid-September (after he finishes Chemo).

I think he will adore his Kindergarten teacher:

Mrs. Hymas.

 And this is Mrs. Baker-- she is over special ed and will

be his one on one aid.

I was also quite relieved to recognize a couple of cute

little Kindergartners.  My cousin's daughter is in the class-- 

as is this munchkin-- she goes to our church and has been

over to the house twice to play with Kean as we prepare him

for school.

My dear friend Pam went with me-

first, to help me get through the day.

Second, so I wouldn't be by myself.

And third, to take pictures of everything.

We are going to make Kean a book with pictures of his class,

teacher, aid, cubby etc. to try and prepare him as much as possible.

Too bad, a little picture book cant help prepare this

mom for her baby to go to school on his own.

I can guarantee I will be a hot mess come September 14th!

The End of an Era

Changes are starting to come fast and hard as we count

down the weeks to the end of Kean's Chemo.

Once that ends, he will start Kindergarten (school

actually starts next week but Kean won't start until mid-September).

And that means we will put a stop to all of Kean's home therapies.

Maureen, Andrea and Claire have been coming to our home

for years (Maureen since Kean was one- I think).

Today was Claire's last day coming to the house as his Speech Therapist.

 We love, love, love these ladies-- they have become part

of the family.  So today was quite the milestone.

Oh, we'll see her again.

Once Kean gets his "sea legs" with Kindergarten, we'll

likely start going to see them in their office

but it is still bittersweet.

 Kean also had horse therapy this afternoon.

I should say, Kean and his entourage.

Greer and Reese went with us-- and we were joined

by Clark and Laryn who have helped us

with his horse riding all summer.

You should have seen us today.

All Kean wanted to do was "trot, trot, trot"!

The Doctor Day

Are you sitting down?

Kean will be turning 6 next week.

He still seems like my baby.

Guess all moms say that about their youngest.

Since he's getting so up there in age, he will be starting Kindergarten

in the fall (after his Chemo is over).

And that 6th birthday also means he ages out of his little 

therapy school program.

Today was his last day (sniff, sniff) with Pat, Tricia and Therese--

his Speech, Occupational and Physical therapists.

We LOVE these ladies and even though they push him

and make him work (and make him be nice) he loves them too.

He will still continue with his intensive therapy on Fridays 

(yep, I'm pulling him out of school) so will see at least Therese.

 When we got home today, Kean had a special and early

birthday present waiting for him in the mailbox:  a Joy Jar.

 The jar, filled with all kinds of toys and goodies is from the 

Jessie Reese foundation.  Jessie died of cancer as a teen

and her family started this organization that sends the Joy Jars

out to children throughout their treatment. 

It is hard to determine who gets more excited over them:  the girls

or Kean. 

 Then it was off to the doctor's office-- no not with Kean

but with Greer.

She complained of ear pain about two weeks ago.

It went away after one day but now she can't hear out of her

right ear.

 And that's not an exaggeration.  The in-office hearing test

showed us she couldn't hear a SINGLE beep from the machine.

No wax, no ear infection that the doc could see.

So now, oh joy, we get to go spend more time

at another doctor's office getting more tests.

Arrrggghhhhh.

 Now onto the fun news.

Tonight-- finally, we had Dr. Rich Lee and his family over for dinner.

 Over six years ago, when I was rushed to the hospital

while I was pregnant with Kean-- he was the Perinatologist

(high risk pregnancy doc) who was assigned to my case.

Come to find out, we went to the same University at the same time

and he grew up just down the street from one of my close, close

girlfriends in Pasadena.

Small, small world.
We had so much fun catching up and getting to know his 

cute family.

Reunited

So Kean woke up feeling rather lousy after his big Chemo day yesterday.

But... he sure turned a corner once we got him outside.

I tell you, that boy loves the great outdoors.

We finally (don't get me started) got his new therapy

tricycle put together (thanks Trent for the help).

And off we went today.

We rode down to our neighbor, Grandpa Bodily's driveway.

Which sure brought back the ol' memories of the countless

hours we spent doing "lawn mower" therapy -- trying to

get that little boy to walk.

This time, Grandpa Bodily is on a cane and I figure

this tricycle therapy is as good for him as it is for Kean.

 Right now Kean's ankles and legs aren't quite strong enough

to pedal the trike by himself but I'm told his legs going round and round

as we push the contraption is still good for building up muscles.

Bet you can guess what we'll be doing every day from here on out.

Robert Redford

So get this.

Kean had his best day ever at his little therapy school today.

His therapists were almost giddy as they told me how he dazzled

AND how he was nice to the other two kids (even sharing).

Perhaps we will survive Kindergarten.

Here's the funny part, two of his therapists decided he looked like Robert Redford

with his tousled blonde hair (and his dapper outfit).

We all thought that was quite funny until his Occupational Therapist

told us she had never heard of Robert Redford.

What the?

To try and drown our sorrows of feeling so old after that comment,

we went over to the Moomey's for one incredibly delicious dinner.

Holland and Greer left for church Girls' Camp this morning-- so dinner was

a bit quieter than usual.

After dinner and dessert, Elly took Kean outside to

play ball with Pete, the dog.

 That is one crazy dog-- and one crazy boy who loves

to watch the crazy dog.

 Kean kind of has this obsession with Pete.

Poor Pete, I'm sure he is quite relieved when that kid who 

chases him all over the house and yard finally leaves.

I think they'll both sleep soundly tonight!

p.s.  tomorrow is heavy Chemo at the hospital.

Can you believe this is our second to last big Chemo?

Pinch me, pinch me, pinch me.

Sweet Victory

We had success today.

Kean had another session with his new Habilitative Therapist 

(Behavioral Therapist), Dee.

Today, we went over to my friend, Liz's house and had a play date

wither her son, Levi and his older sister Morgan-- as part of our

efforts to prepare him to be around children when he starts school in the fall.

 First the good news, they kinda played together for a bit.

 There was a lot of what they call "parallel play" where Kean

did his own thing alongside them, but there were moments 

where he participated and responded to their play.

And now for the better news-- there was no hitting or pulling of hair.

VICTORY!

 p.s.  Blackberries should be coming on hot and heavy starting this

weekend or next week.  Please, please let me know if you want some.

The girls are selling them for the same price $18 a gallon.

Since they will be out of town all next week at cancer camp,

they've decided to spare their mother from berry slavery,

you can come pick your own for $10 a gallon.

The Lamb to the Slaughter

Bet you didn't know today was

"Happy Sister Day".

Yep, me neither.

Greer decided to make it up.

I swear, Hallmark should hire that girl.

 Actually, I shouldn't ridicule.

The girls have been doing each other's chores,

giving little gifts and decorating their rooms.

Maybe, Happy Sisters Day should be everyday!

 And remember how I told you about how we had that

Habilitative Therapist come to the house last week

to help us get Kean over his hitting and pulling hair issues

and ready for Kindergarten.

Well, today he had his first official play date with a friend's son

while Dee observed and corrected.

When I asked my friend to bring over her son, I warned her

he'd be putting himself at risk.

 I can't really say they played together.

Kean played alongside him a bit, wanted the toys Levi had

and eventually took turns doing tricks on the trampoline.

I was surprised at how well he did with Levi "in his space".

Here's Kean doing his trick.

Dee, the therapist said he was probably in the "honeymoon"

phase where they are both being really nice since they don't 

know each other.

Of course, it probably helped that there were three adults

hovering over them, watching every little move.

We'll try again.

But for tonight, Levi should get a blue ribbon for

having a very one sided play date at our house.