Wednesday, January 26, 2011

Last night my favorite sister, Lori, shoved a CD in my hand and told me to listen to it.

It's the "MEN" of the Mormon Tab Choir, their newest CD.

I love male chorus stuff anyway due to the fact that I was in Freshman Boys Choir at West Phx High School for 4 their pianist !!!!! My Dad had something to do with that, since he was the choir director.....but....that's a whole nother blog !

As predicted, by me, i boo-hoo'd through the whole thing. Music touches my soul, even more now that I dont have my beloved Harp anymore.

Lately i've been in a bit of a "slump". Who knows why.....pick anything, and i' m probably in a slump over it.

But the last track on the CD lifted my spirit and elevated me high enough to feel like I just might get through....whatever you call this....just LIFE, I guess.

The song is ""He's Got the Whole World In His Hands". I remember singing it as a child in Mrs Eymon's Vacation Bible school. ( I only went there because she gave out candy if you could quote a scripture!)...(("Jesus wept" always counted!)

As the song started, a delicate Harp and flutes accompanied the tenors. The simplicity of the words were re-assuring that "He's" got the wind and the rain, sun, moon-- in His hands....

The song had a gradual build that finally boomed those awesome Tabernacle organ base pipes bringing up all the volume and letting out all the stops as the voices rang that---- "He's got EVERYBODY ---in His Hands!"

Even my Marky !

I was overwhelmed at the comfort and confidence i felt as i was reminded of this guarantee !

This "Unlimited, lifetime Warranty" that is promised to us. .. Our Heavenly Father KNOWS WHAT HE'S DOING !

I keep forgetting that simple fact.

Glad I listened to my Sister, for once.

Love, Netti

Thursday, January 20, 2011

Tuesday Marky got another round of Remicade--

---the infusion meds that are supposed to suppress everything.

While we were up at PCMC getting that done, which takes about 5 hours, we were visited by a new Doc that does "integrative" medicine.

This term, "integrative", means... for all you who are not sure...the fusion of Eastern and Western style medicine philosophy.

For some of these chronic pain and disease kids, the combination of techniques may be a way to help.

So this cute Doc, who i thought reminded me of "Tinkerbell", came in with a fist full of needles !

Marky's eyes went HUGE at the sight !

Acupuncture was the activity she had in mind for the little warrior !

She explained the whole idea, about pressure points and how the instep area on your feet directly correspond to your colon/intestines and all that cool stuff , along with various other points of interest along his extremities that she had in mind for the puncturing fest.

I though it was intriguing and was anxious to begin !

She demo'd one of the needle pokes on my hand, between my thumb and first finger to show Marky that it was "easy"...

It wasnt a big me.

Then the little warrior let her "tap in" TEN needles up and down starting at his feet and ending with his arms and hands !

Marky just laid there and took it...he probably took himself on a ride in Ken's blue boat on a lake of glass water.

The Dr. announced that she would be back in 30 min.s to remove the needles !

These needles were very thin and fine, but were about 2 inches long.....from a childs perspective...there is no such thing as a THIN or FINE NEEDLE !.


I was not sensitive to this "perspective" on needles until AFTER the "Needle Doctor" was gone.

Marky asked for help to get up to use the restroom after she left. So I helped him up and dragged the IV pole that was still draining in the good juice.

I noticed his back and hair were drenched in sweat!

I said, "Marky, why are you soaked in sweat?"

He looked at me like i was a total idiot and said,

"Are you kidding me?.. I just had TEN NEEDLES sticking outa me for 30 minutes ! "

Again, Marky shows me the true Hero that he is.

He never flinched during the whole thing. Several Nurses and "gawker's" came in to see the procedure while he layed there like a pin-cushion for 30 min.

He took it like a champ. The only tip-off to me was the sweat drenched hair and shirt...after the whole thing was over!

He continues to lead us all in battle techniques, and COURAGE, over and over.

Thursday, January 6, 2011

Last night we ran outa hot water !

Here's why........

I put dear, sweet, angel Sam in the bath tub.

I was standing just a few feet away folding the Matterhorn of clothes piled on my bed, when i heard dear, sweet angel Sam saying one of his new words...


A quick investigation of the contents of the bath water revealed.....indeed there WAS an "Eeeeeuwww" floating, thus compromising the hygenic integrity of the bath water.

So, i extracted dear, sweet, angel Sam and transferred him to the other bathroom to resume his bath experience.

While i returned to the original crime scene in the first bathroom and was further extracting "other" items from the water, I hear again from dear, sweet, angel Sam.....

"Eeeeeeuwwww" !

You guessed it .....Another violation of the integrity of the clean bath water ! !

Two bath tubs filled with nice warm bath water, then--two bath tubs needing to be disinfected with hot water.....

And.. that's how we ran outa hot water last night !

Sam IS a dear, sweet angel....isn't he?

Wednesday, January 5, 2011

Wednesday from Marky:

This is pretty much the only time I can spend
"quality time" with Sam........
......if you know why ! "

From Marky J.

Saturday, January 1, 2011

SIX years ago today..New Year's Day...our Sweet Sam was born !

Im sure I mustve blogged about him last year.

But, his story warrants another attempt at describing one of the most amazing experiences .

We knew he was coming with an extra chromosome , making 21 !

Trademark of "Down's Syndrome". Had tons of ultrasounds to chart his development. All was going well until.... adventures began.....

He was born at 32 weeks! That's 2 months early!

Two days before the delivery, an ultrasound discovered that all his amniotic fluid was trapped inside Sam's kidneys and bladder.

He had a "kinked" off urethra..or "Pee Pipe" if you will !

A quick round of some kind of steroids were pumped in me for lung development for the baby and on Jan 1st the Docs C-sectioned him At University of Utah.

He was immediately whisked away, across the "cat-walk" connecting the "U" to Primary Children's Hospital.

He spent the next 2 months clinging to life in the NICU. He not only had bladder reconstruction work done, but shortly after birth it was discovered there were 3 holes in his heart.

One of which was too big to close on its own, like many littler ones do. It was later repaired during open-heart surgery at age 6 mo.

He weighed in at birth just under 2 lbs !

He had several spinal taps. A ventilator, placed during one night when his lungs collapsed from pneumonia. And countless other complications.

This was our first experience with PCMC...AND the angels.

Sam was accompanied with his own "band of Angels". I cant remember who told me that he would be.

But he was......And lots of them.

Seen and unseen.

He was a gift I still feel I dont deserve.

I whisper in his ear everynight as he goes to bed..."Thank you for coming to me, Sam".

He is a handful, mischief galore! Yet, Love thats unconditional is his message.

So tonite, Sam, Happy Birthday my sweet angel Boy.

And...thank you for coming to me .

Love, your grateful Mom.