Thursday, April 28, 2016
We had Kean's dreaded monthly cancer screening today.
Well, actually, it wasn't so dreaded.
I think I'm getting control of my fears a bit
or perhaps, I'm just too spent to get worked up.
Either way, all went well today-- other than
Kean couldn't wait to get out of there.
Notice anything funny?
Yep, he's missing his pants.
I changed his diaper just after Dr. Camilo
did a thorough examination of his testicles
(Leukemia likes to hide in testicles)--
and Kean peed all over the good Doctor's hand.
I don't think five minutes had passed since I'd gotten him
dressed when he let loose with a gallon-- and peed through
his diaper, his pants and MY pants. (He was on my lap).
I know I've said it before, but sometimes I'm just in awe
of the glamorous life I lead.
Driving home in urine soaked clothes is always a bonus.
Here's the good news though- Kean's counts
are looking so good (right where they are supposed to be)
we don't have to go in for two months.
Here's to the month of May being stress free!
Wednesday, April 27, 2016
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.
Friday, April 22, 2016
In case you didn't know it by now: Kean is a super star!
He was one of several honored kids at his school
this morning-- getting to eat breakfast with the principal.
He was nominated by his teacher- Mrs. Hymas.
She nominated a boy and a girl in her Kindergarten class.
(Isn't she cute?).
And of course, his wonderful aid was there- "Baker" as he calls her.
(Instead of Mrs. Baker).
Funny thing is, he was totally unaffected by the limelight.
But did quite enjoy his donut and mine.
They called each of the kids up to the front of the gym.
There the principal (kinda) shook his hand, gave him his certificate
and passed him along down the line for high fives from
every teacher and aid at his school.
Then the entire audience clapped as we made our way back to our seats.
Yep, a rock star who doesn't even know it.
Friday, April 15, 2016
And so it begins.
Today was the first of three sessions at St. Luke's Children's Hospital
for Kean's IQ and Neuro testing.
For him to continue to receive his budget for extra therapy and help,
the Department of Health and Welfare is requiring us to test his
IQ and abilities-- to basically prove he still has Down syndrome and
is still physically and mentally challenged.
Don't get me started on what a colossal waste of time and tax payers dollars
this ridiculous testing is-- I'm guessing some idiot parent scammed the system
and ruined it for the rest of us.
So test we must.
He was supposed to have this done last year when he turned five
but if you remember, he was on Chemo and so miserable, he
cried all the way through the testing (until I was crying with him).
Today, was much better.
We spent the first hour in observation, answering questions
and bringing the doctor up to speed on his changes.
The second hour she tested him with toys and games
while I filled out question after question after question after question.......
Two to go.
Monday, April 11, 2016
Now that life is back to a more "normal" dull roar,
I've slacked off on keeping this updated.
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
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.
Tuesday, April 5, 2016
I'm a little late on this. Actually, our whole family
was a bit late celebrating Easter together.
Since we were driving back from our trip to California last week,
we opted to hold the traditional Cousin's Easter Egg Hunt
at my folks house the other night.
This was the year Kean got into the swing of finding candy
We didn't do too much but the highlight in our family is a golden
egg (with five bucks inside) one with the name of each of the cousins
written on it-- and hidden relatively hard.
It keeps the older kids quite busy!
(Which is good, trust me).
(Which is good, trust me).
The girls were all so good at helping Kean find his candy.
He'd take it over to Grammy and she'd help him put it
in his bag (we forgot to bring baskets-- lame mom).
I think Kean's favorite part of the whole Easter Egg Hunt
was not eating the candy in his bag (the good stuff)
but pawning jelly beans off of Grandpa.
(My dad always has a pocket full of Jelly Belly's).
Wednesday, March 30, 2016
I'm so glad I was wrong.
After being up all night with Kean coughing like a horse
and a steady fever, I thought for sure we'd get admitted
to the hospital today.
Luckily, by his afternoon appointment, his fever was gone and
his tight cough had lightened up a bit.
I didn't even mind unpacking the bag I had packed.
(Try saying that 10 times fast).
Kean cracked everyone up by motoring back all on his own
to the Vampire Chamber (the blood draw room).
My mom, broken foot, bruises and all went with us.
She did not want me going alone. Love her!
Anyway, the verdict? Kean has one of those nasty viruses
circulating around. His counts all looked great except for his
Neutraphils (his ability to fight germs)-- they were crazy low.
Dr. Camilo figures it is because of the virus. We'll
check them again in a few weeks.
And that was it-- we GOT TO GO HOME!
Finally, remember the woman in Kentucky who has been paired
with Kean and runs for him since he can't run for himself?
Look at this super cool picture of her nails.
She has a big "Blue Grass" race this weekend.
Love it and love her.