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!

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.

On Fire

So I failed miserably in finding a Dermatologist that would

get Kean in asap.  Trust me, it wasn't for a lack of trying.

I found plenty willing to see him in a few weeks

or even a few months.  What's up with that-- with all these rashes

do Dermatologists not keep any emergency appointments available?!?!?

Instead, I took him to see his Pediatrician.

Here's a bit of good news-  he's eating better and has

gotten back up to his "fighting" weight.

 As for his rash?  It is looking a lot better today but is

incredibly dry and itchy.  His doctor today said it looks

like a cross between the Measles and someone who has

had their skin scalded with boiling water.

Notice, the runny nose that is back.  He's had a faucet for a nose

for about three months.  It went away for about six days 

when he was on antibiotics a week and a half ago but unfortunately,

now it is back-- and as prevalent as the rash on his face and body.

 He doesn't seem to have a sinus infection but he does have

fluid in his ears.  So he is back on antibiotics (geez, four times

just this month-- can't be good).

She is putting him on a steroid ointment for his rash

and I'm hoping this will give him some relief.  I just couldn't find a pharmacy

that had it this evening (tried four-- but was promised the prescription

will be in in the morning).

His doc also spent quite a bit of the time we were there

consulting with an Infectious Disease doc.  They are

cautiously watching him (and having me watch for signs) in case

he is allergic to the Sulfa drug he is on.  He's been on it

the entire time he had cancer and is supposed to stay on it

until about the end of the year.

If he's not looking markedly better by Monday, we will go

have the Infectious Disease doc examine him.

Oh joy.  More appointments.  Here's hoping he

rounds the corner soon, soon, soon.

 Tonight we got to forget all about itchy rashes

and long, long doctors appointments

and party with about a hundred teenagers.

 All the youth from our church congregation

had hay rides this evening and ended up at

our place for a massive bonfire (yes we had to get

a permit and warn the neighbors)

and then have hot chocolate and donuts.

 Kean was totally into it.

Well, not so much the fire but the two donuts 

and cup of hot chocolate he snarfed down.

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.

A Stay of Execution

Boy am I ever tired.

My day started before the sun.

We had one of our celebrities from Baldapalooza in town and

appearing as a guest on our local NBC station.

Stuart Edge is known for his pranks, magic tricks and video stunts.

He has - get this, over two hundred million hits on his videos!!!

Crazy.

 He did a great job and we had a lovely breakfast afterwards

where he completely stumped us with his magic tricks. 
I'm still scratching my head.
See if you can figure it out.
https://www.youtube.com/watch?v=mBp0MOSdEL4
After breakfast and after Stuart looked at my ring and then it 
somehow ended up on his key chain in his pocket (what????)
I rushed home to get Kean
and head to his first doctor's appointment.
We went to see his ENT-- Kean is on his 3rd or 4th set of ear tubes.
This latest set has fallen out but one of them is stuck in his left ear somewhere.
We've been hoping it would work its way out and avoid surgery.
Today was the big decision day.
However, he now has a "granuloma" blocking his ear so the doc
couldn't see if the tube is still there.
So he is again on anti-biotics and we go back in a month.
Here Kean is with his favorite nurse from that office, Carlene.

Then we headed over to "our" hospital for blood work, 

a doctor's appointment and a check on his counts.

He sure gets spoiled when they take (in today's case, try and take -- we had problems)

his blood.

Let's just say there's lots of singing, dancing and bubbles

in the Vampire blood room.

Kean's counts are good-- where they should be for a kiddo

on Chemo.  We were a bit worried-- his docs had upped his

Chemo levels and his counts were too high last time.

My dear friend, Julie Kingsbury came with us today and sure

helped us get through this crazy, long day.

I had to share this cute, cute picture of our little guy

that Julie took.

While we waited for the hospital pharmacy to get his meds

ready, we took Kean up to his old 4th floor stomping grounds

to see some of his favorite nurses-- Joe and Kate!

Long day but a good day-- we are getting closer to being done!

I Cracked

So I completely lost it today at the hospital.

The runny nose to match the runny eyes kind of lost it.

The totally humiliated myself in front of a stranger kind of lost it.

(disclaimer:  picture taken after fled  left the office). 

 I don't know if you remember but a month or so ago,

we got a letter from the Idaho Disabilities Commission 

saying now that Kean is five we needed to have him

re-tested for Down syndrome and Global Delay to continue to

qualify for therapy

(what, like the Down syndrome was just gonna go away?).

Anyway, the full IQ testing required is usually only offered

as part of an 8 hour psychological workup and neurological testing.

Earlier this week, we met with the doctor for observation to confirm the fact

he'd never be able to make it through 8 hours of testing.

So today's testing was "only" supposed to last 3 hours.

Ummm, we were done in one.

And this picture is probably one of the highlights of the session.

It was awful.

No, make that horrible.

Once a week he takes a drug that supposedly makes

everything in his body hurt.  Well, he took that last night.

Who knows if that is why he was so ornery or if he is just 

going through his "terrible twos" (at age 5)... but he was a total pill.

He threw all the toys the doctor had for the testing.

He'd just look at her when she'd say "put the horse behind your back".

(He finally picked up the horse but had no idea what to do with it-- 

and that was one of maybe three

times he cooperated).

After what seemed like forever of him not cooperating, he burst into tears, sprawled

out on the floor and sobbed.

I then made the mistake of saying that this is my huge fear for

him since he is supposed to start school after he finishes Chemo

in the Fall.

He is so not ready!

That's when I totally started bawling.

Ug.

I just don't know how he will ever make it through school.

The good news is we finally got him (and me) settled down.

Nothing like singing every song from The Sound of Music.

Thankfully, the doctor joined right in.

Yep, she should get awarded an extra few letters after her name 

for that one.

The better news is, she talked to the state (she's had one other child

like this who was unable to be tested) and she is having me fill

out several booklets with a gazillion questions about his abilities

and lack of abilities.

She is also going to collect evaluations from his therapists

and put together a report from all of that and what little

she saw.

I've realized tonight, it really doesn't matter

whether she was able to get much out of him.

The bottom line is-- he still needs a lot of therapy

and intervention (especially with the Chemo slowing him down even more)

and no matter what, she would have figured that out.

I think I had one of those days today where I realized

just how much work we have ahead of us to get him where he should be.

Blasted cancer!!!