Motor Mouth Becomes Metal Mouth

It happened.

Gigi got braces today

and I think she looks adorable.

 Okay, so maybe she looked kind of like a platypus during

the procedure but she looks cute now.

And here's my update on Kean's medical issues.

We drove through a snow storm (again) on Monday

to make it to the hospital for his meeting with

the Pediatric Neurologist.

 In short, all is well.  

 Dr. Foy didn't find anything scary from his EEG and found

no reason why he had those two seizures.

So we are not going to do anything, we especially are

not going to worry and we hope we can be done with this nonsense!

Testing Torture

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.......

One down.

Two to go.

Doctors Schmoctors

What's that old joke about Spring in Idaho?

If you don't like the weather, give it a few minutes.

We had sunshine, rain, wind and yep, lots of hail

(several times).  

The puppies weren't quite sure what to make of it.

 And by now you've likely heard what has been keeping

us running (no pun intended).  My mom fell 10 feet off of a ladder

and landed on her garage floor.

She has a broken foot--

which we got good news about today:  no surgery needed.

But she does have to keep off of it for six weeks.

That's gonna be tough.  Especially since my dad cracked

three ribs on Valentine's Day.

 My mom is bruised from her eye down to her neck.  Her

shoulder, her backside-- with new bruises popping up as we go.

I'm about to bubble wrap both of them.

 And just because we don't see enough doctors in our world--

we had to spend an hour with another one this afternoon.

It is time for Kean's evaluation by Health and Welfare

to determine that he still has Down syndrome and therefore

still qualifies for therapy services.

 Nope, it hasn't gone away.  He still has it.

And was quite bored in the office while I answered

at least a hundred worksheet questions about his

abilities or lack of abilities.

 And that's just step one.  We are being required

to get his IQ tested now that he's off Chemo

and might actually cooperate.

I can't think of a bigger waste of time or waste

of taxpayers dollars.  But hey, it's required.

Geez.

Gobily, Gobily....

If I had written this post just last night, I would have

gushed on about how his rash is looking better every day.

That is until today.  When he got off the bus, his rash

had flared and is now down on his stomach.

 It's not as bad as it was... but I'm sure discouraged that

we took a step back.  It has now been over a month

of itchiness!

We head to the doctor on Tuesday for clinic and testing...

we'll see how things look then.

 Now onto some much happier news.

Kean has wanted to detour each morning and head to Grandpa

Bodily's instead of going to the bus stop.

 He has shortened Grandpa Bodily down to "Gobily"...

and as we steer him down to the bus stop, he wails and wails

for  "Gobily".

We just laugh and laugh!

p.s.  we go see "Gobily" after he gets off the bus at noon!

Might As Well Go Out With A Bang!

Good heavens!  You'd think here we are a few days

from closing the Chemo chapter and we'd at least get to coast.

Um, no.

Kean pulled one of his "wouldn't wake up" and "give mom

a heart attack" hypoglycemic seizures this morning.

 Eating has been a battle for the past two weeks

with him not feeling well (between Chemo and a cold)--

I thought I got enough down him last night but guess I didn't.

His blood sugar was 41 and lucky me, got to give him

a shot in his leg to get it up.  If you know me, you'll

know I detest needles and putting one into his thigh

is right up there with getting four root canals simultaneously.

 What had us scared this morning is that he didn't come

around even after the shot and after drinking orange juice

and eating a little.  Just when I was about to haul him 

down to the ol' hospital, he finally perked up a bit--

 but that wasn't until nearly nap time and after he just 

wanted to be held much of the morning.

I will not miss these moments of terror one bit.

Notice I'm planning on them ending with his Chemo.

They had better.

A Hot Mess

So do you want the good news first or the bad?

We went back for Kean's check up with his ENT specialist.

The Granuloma has finally cleared up after two months of antibiotic drops

in his ear.

That's good.

However, it was covering up what we were checking on in the first place--

the fact that the tube in his ear is dislodged and still in there.

That's bad.

But.... his doc said we can wait another six months, hope it works out on it's own

and avoid surgery.

That's good.

By the way, this snap is before the check up-- before it took FOUR of us

to hold him down.

Trust me, he's stronger than he looks.

Speaking of strong.

I'm so-- not.

Tonight was back to school night at what will be Kean's new school.

His Kindergarten teacher is darling and had each of us go around

and introduce ourselves as so and so's parent.

I stood up, introduced myself and said I was Kean's mom

and sat down.

Mrs. Hymas asked if I would take a minute and tell the parents about

Kean, since they talk about him in class every day.

Oh dear.

I got two sentences in... to the part where he is finishing Chemo

this weekend and starting school on Monday and totally lost it.

That ugly, voice gets tiny and squeaky kind of lost it.

Sometimes I don't recognize myself.

I know come Sunday and Monday - I will be an absolute mess.

So steer clear.

Kean's last dose of chemo-- day number 1,157 is Sunday.

His doctors tell me it will take a good year for his immune system

to get back to normal levels but they don't want to wait to get him

going in school.  So we are starting him the very next day.

We've had numerous meetings (another big one tomorrow) with the school

team and the hospital to prepare for this big transition.

His therapists even helped us make this little book to

get him familiar and ready with his new surroundings.

I tell him this is the bus that will bring him home to me each day.

He'll have an aid on his special bus and he will be belted in.

They suggest I let him take the bus rather than having to transition

down the road from me taking him to him taking the bus.

So we will start Monday morning with many, many big changes.

Part of me is so very excited and part of me is scared to death for him

(and me).

So Not Dullsville

I don't think we know how to have dull moments around here.

The past few days, we've had the cousins in town from Texas.

So it's been lots of games...

 and giggles crammed into a short amount of time.

 The older girls all got up and went to the temple

early Friday... and did swimming and sliding 

in the afternoon.

Kean has kept us on our toes.

As usual.

He's been on heavy antibiotics for that sore throat

but still won't eat.

And he's got a lovely rash on his face that has kept me worrying.

 Tonight we finally figured out that it looks like he has Thrush in his mouth--

a side effect from the antibiotics.  So now he's on another

new drug to clear up the problem from the old drug.

Can't wait for our home pharmacy to be closed

or at least pared way down!!!

Oh and just to keep things interesting, I got stung by a yellow jacket

on Thursday.  Tonight, Saturday night, the swelling, redness

and heat in my arm is finally settling down.

I guess I can't double for Quasimodo anymore.

As I said, we don't do dull.

The Stubbornness Chromosome

We had a lovely surprise visitor at the house this morning

when we got home from horse therapy.

Maddie Clark was there bearing a big bottle of orange juice

for the Keanut man.

He has been hooked on OJ lately and can't seem to get enough of it.

I tell ya, this boy is stressing me out.

I got a call from his Endocrinologist's office today

telling me he's too low on his "fructosomine"-- some

sugar level and now needs to eat a small meal

every three hours.

Um, maybe the doc can do better at getting this boy to eat and drink.

I swear, he got an extra chromosome of stubbornness.

He will only eat and drink if he wants to.

Take tonight, for example, I tried about everything in the house

and couldn't get him to eat more than a few bites of food and

a few bites of a smoothie (spiked with tons of raw corn starch that takes

10 hours to break down in his body so he won't have a hypoglycemic 

seizure).  And just when I thought perhaps, maybe, I got enough

down him-- he threw it all up.

Arggghhhhhhh!

We will see how he does in the morning.

(I did get him to drink some chocolate milk with corn starch).

As for much better news,

Holland spent the evening downtown at one of the parks

helping our photographer friend, Fabiana

as she did a handful of photo sessions with some

of our cancer heroes.

Fabiana is shooting 20 cancer kids this week

as we get everything done and ready for our

Hall of Heroes at St. Luke's on the Pediatric Cancer floor.

She showed me some of her shots in her camera this evening

and they are beautiful!!!

Can't wait.

Oh Brother!

Geez, it's always something.

Because I don't have enough to worry about,

the doctor  suspects Kean may have Jaundice.

Both Byron and I have noticed separately

over the past week and a half that Kean's hands

have looked quite yellow (on and off).

Today, at his horse therapy lesson, Candice

even picked up on it.

(Sorry, this pic doesn't do it justice)

The good news is we don't have to take him him, 

we just have to watch him 

closely and try to keep him extra hydrated etc.

Good luck with that- he is one stubborn chicken and

will only drink when he wants to drink!

5 Years Gone

This is one of those days I'm so glad is over.

Kean wouldn't wake up this morning

and had another one of those Hypoglycemic episodes

where he is cold, clammy, and near comatose.

My girls have it down to a routine.

Reese grabs Kleenex to hold on his finger

after I take a little blood sample,

Greer grabs the camera to document it for the doctor

and Holland gets a cup of Orange Juice ready.

The girls are truly superstars.  They got their own

breakfasts, made their school lunches and got ready and out

the door while I held Kean, tried to get him to drink and eat

and talked with the doctor.

I can't wait for his Chemo to be over and done with.

His Endocrinologist thinks these episodes will go away too.

They better.

I loose five years of my life each time we go through this.

We are lucky though, after an hour or so, he's totally back

to normal.

He had horse therapy and speech therapy and did quite well.

You'd never even know there had been so much drama in the house!

It seems we must have a magnet for drama.

Kean's horse therapist, Candice (the one who lost

her horse and the baby during birth) started having

some pretty serious pre-term labor signs today.

So guess who got to take her to the hospital this afternoon?  Me!

I was going already for a meeting and so it worked out great.

She saw her doctor two floors up from where I met with Kean's.

So quick update-- all is well with Candice and her baby.

And my meeting?  It was with the Neurophsychologist

that was trying to give Kean an IQ test when he lost 

it and then I lost it a few weeks back in her office.

She gave me the report she is giving to the state

to make sure Kean continues to qualify for therapy.

Anyway, her report was BRILLIANT!

She totally took the state of Idaho to task

for wasting time, money and resources by requiring

a child with Down syndrome who is currently undergoing

treatment for cancer to go through this ridiculous testing!!!

She's my new hero.

It was sure nice to have my exact feelings validated!

Breakfast Heart Attack

Kean has been serving as our little rooster and waking up

every morning between 5 and 5:30 a.m.

I should have known we were in trouble when he still

wasn't awake by 7:30

 When I went to wake him up, the poor

boy was drenched in sweat, cold and clammy,

and completely non-responsive.

 His temperature came out at 95.6 

and his blood glucose level was a low 64.

I can't for the life of me figure out why though...

every other time he's done this, we could pin it on the fact

he didn't eat well the evening before.

Last night, he ate and drank a ton.

I could tell he hasn't felt good for a few days

but I still can't put an explanation to this one.

Of course, his cancer doc wanted us to go to the E.R.

but thankfully we were able to get a little bit of orange juice

down him and within 30 minutes he was coming around.

Thankfully we got to stay home.

Can't say the same for poor Reese.

She still had to go to school, still freaked out.

I probably say this too often but I can't wait for this

part of our lives to be behind us!

While You Were Sleeping

I swear, some days I just have to say to myself

"you've got to be kidding"!

While you were sleeping, we were up all night,

bundled up, sitting outside in the cold.

I never went to bed.

Just as I was trying to doze off, I heard Kean's breathing

sounding quite labored.

Sure enough, after putting a humidifier in his room, he

woke up crying and unable to breathe.

That blasted Croup-- we are way too familiar with it.

In case you don't know, the best remedy is to sit out in the cold, moist air.

(A humid bathroom is the second option).

So out we went, and half an hour later, we called

Kean's on-call Oncologist since he still sounded quite awful.

She called the E.R. to let them know we would try and

sit outside again and if the second time didn't do the charm,

we'd be on our way.

Round two of sitting in the cold on the porch-- we got smarter

and watched Cars for over an hour and a half on the i-pad.

Here's what he sounded like just before we turned on the movie.

All that time in the cold air helped enough

to make us feel like he's be safe to go back to bed.

So we did get a few hours of sleep (a few). Ug.

What is so absolutely crazy is that he showed 

no warning signs whatsoever.

Take a look.

This is Kean right before bedtime last night.

He couldn't look or sound better!!!

 

Crazy.

So much for taking it easy and getting to bed early.

Tonight I had to take Holland to an open house on a

specialized high school she is interested in attending.

Seems like yesterday she was this little thing running around.

Can't quite get my head around the fact she will be entering

high school next fall.

Anatomy of Misery

I don't need a picture to paint a thousand words.

One word will do just fine-- misery.

 This round of Chemo has hit Kean hard and fast.

 It has been a long, long day filled with lots of grinding of the teeth,

whimpering, whining and flat out crying.

On the bright side, there's been lots of snuggling.

We did get out of the house for a doctor's appointment made

three months ago.  Kean's ENT wanted to take a look

at his ears.  He has one tube that is still in his ear but not functional.

We decided with as ornery as he was today, we'll continue to wait

(instead of surgically removing it).  He got a six month reprieve.

And that little puppy better be out of there by then - on its own!

I'm off to bed.  

Some Answers?

Well, we finally saw the specialist today-- the Endocrinologist.

Dr. Flynn was extremely thorough-- we not only talked extensively

about his episodes that mimic Hypoglycemic seizures but also discussed

Kean's entire medical history.  And as you can guess, that

took forever.

 In a nutshell, he thinks my theory is probably right on--

that the Chemo he takes fasting each night is too hard on his little

body and that his liver probably doesn't bank enough sugar (?) to

get him through some nights.

He's gonna run a bunch of tests with Kean's blood when we have Chemo

next week.  He wants us to try adding a prescription non-refined corn starch

into his meals -- that will take longer for his body to break down.

If that doesn't work, our least resort will be a night time feeding.

One other interesting development came out of today's 

appointment.  Kean has been on Thyroid medicine 

since he was an infant.  Dr. Flynn told me today, that

his Thyroid medicine has basically been worthless.

Since Kean can't swallow pills, he's been taking a compounded

liquid.  Dr. Flynn said that it is impossible to get Thyroid

suspension stabilized and that Kean likely has only been getting

a whopping 25 percent of the med.

I'm thinking this could be good news.  Regular tests

show his levels have been fine-- so if he's not getting the

right amount of medicine, I'm hoping maybe we can drop

this medicine from our long list.

Wouldn't that be great?

The Wrestling Match

If only they had offered a Girls Wrestling Team in high school.

I really could have used some sweet moves today.

Kean had his annual check up with the Pediatric Opthamalogist

and boy, oh boy, was it a doozy.

We had a lot of waiting.  Lots.

But that wasn't anywhere near the challenging part.

Phase one:  putting three drops of medicine in each eye.

Trust me, he's much, much stronger than he looks.

This is while we waited about 45 minutes in a room

away from all the other kids for his eyes to get dilated. 

 Phase two:  the trickiest part was holding him down and still while the doc

looked and tested his eyes.

I'm quite certain, Kean landed a few swift kicks to the poor guy.

I have this crazy hope that someday, someday I'll be

able to take him to a doctor's appointment and he'll be able 

to sit, cooperate and follow directions

(without kicking the doctor or biting the dentist).

I have a dream.....

Good News All Around...

We dodged another bullet around here.

Kean's fever finally broke and he's slowly getting his energy back.

I carried him down to see the girls off on the bus this morning and 

then made him do a few laps.

He fought me on it... that is, until Grandpa Bodily came out to

get the ol' tractor out of the shed.

Then guess who motored on over on his own.

 It wasn't his best work out session but we got a few

"walks" in and as a bonus, got a happy boy who was

more than happy to get a lawn mower ride.

 It amazes me how much it takes out of him to fight off any

gunk he happens to catch.

Motorcycle Jeff came this evening to give him a ride

and it was all we could do to get him

to show M.J. his new tricks.

 It took coaxing from all of us to get a few steps.

But at least it was a few steps.

 And at least he got a big reward-- a ride in near perfect weather.

We got some good news today from the Pediatrician--

Reese's bone age test came back normal.

That means she'll grow when she grows.

And thankfully, there are no red flags

or further testing we have to worry about.