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 years....as 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

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 deal....to 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 !.

...A NEEDLE IS A NEEDLE....THE END !

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.

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...

"Eeeeuwww".

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 from Marky:

This is pretty much the only time I can spend

"quality time" with Sam........

......if you know why ! "

From Marky J.

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.

Sending out Happy New Year wishes to all of Marky's Bloggers---

He is laying in bed, the last few days, with Strep throat ! Started on Tuesday.

Went to Doc on Wed., got the "Gag" test and confirmed it. He's gotten Strep so many times this year. All the immunosupressent (cant spell that one) drugs leave him wide open for all that cruddy stuff.

On Monday night, though, Marky got to go to a holiday party with big bro Scotty!

The "other" half of Scotty's gene pool is the Cole family.

I couldnt have asked for a better family to be connected to. Grandma and Grandpa Cole treat all three of our boys as their own.

So this year for their holiday party, they invited Mark to come. They have all been actively praying and worrying over Marky this past year, and he felt good enough to make a "celebrity" appearance. Grandma Cole picked Marky and Scott up and brought em home too. They had a blast.

It was one of the "Cole/Fidler" sister-in-laws, Brianne, (sorry if i spelled that wrong, Bree) that organized the "OnLine" Auction for Marky last winter.

And recently, Grandma and Grandpa Cole surprised Marky with a beautiful hand made quilt they had worked hard on for months. They even brought a little sweet one for Sammy too.

Sammy immediately grabbed a flashlight and crawled under his blanket to hide while he looked at the cute little monkeys patterned in the fabric!

The arrival of the quilt was just in time for Marky's last stay in the hospital. We wrapped him up in it to haul him in and out of the battle-field. And it kept him secured while he layed in bed up there.

They are a dear family and we so appreciate their love and support.

Hope you all have a HEALTHY New Year ! We're gonna try !

Love to all, Lynette

MERRY CHRISTMAS TO ALL OF MARKY'S BUDDY'S

Marky is fast asleep....IN HIS OWN BED (not the hospital!)

He has "visions of sugar-plums dancing in his wee little head".

The plate of (GLUTEN FREE of course) brownies and milk are awaiting their Christmas eve guest.

The stockings are hung and ready for the customary orange to be stuffed into the toe !

All is right with the world, in Markys world !

Im reflecting on the dear children that will be up at PCMC tonight. Perhaps like Marky was last year...too sick to be home..worrying whether Santa will find them up there....Or too sick to even open their presents, like Marky was last year.

Scotty helped Marky open his gifts last year. He didnt have the strength to do it. He just layed, listless in his hospital bed.

The exploratory surgery had happened 2 days before Christmas, last year. James and I spent the night beside our dear boy. Sam was with Aunt Lori, or Uncle Ken.

I will never forget the spirit of Christmas felt that night in the hospital as the group of Resident Doctors that had been so attentive to Marky, came to his room and brought gifts for us.

They wore Santa hats and had made plates of treats to share with us while they were on duty caring for our boy. Most of them were away from their families for the holidays.

We became part of their family as we were brought together during those worst of times.

They showed us compassion and love beyond their "Titles" of Doctors.

I remember them tonight, with my own compassion and love, wherever they are.

Merry Christmas..

...especially to our Primary Children's Hospital Family.

My prayers are for all the dear children laying up there waiting for Miracles of their own.

That they are comforted and relieved of their pain and suffering.

That angels will not cease to attend them.

That promised tender mercy's hurry to their bedside.

Love Lynette

Christmas Eve Eve---

Afraid to say it outloud.....but looks like Santa will be visiting us at home this year !

Marky is feeling great, since his honorable discharge last week.

He's taking oodles of ex-lax every day, and that seems to be doing the
trick. We D/C'd the use of the Miralax.

No pain reported....unbelievable.....miracle!

Hope all of Markys Buddys have a miraculous Holiday season full of fun and good health.

We love you. Lynette

HAPPY BIRTHDAY!! To our family's "guardian", Ken Crocheron !

Ken quietly serves the Jeanes people daily with just about anything there is that needs to be taken care of.

He's a surrogate Uncle, a Harley Dude, a Green Beret, a HALO paratrooper Jump-Master, a gifted wood turner, A talented musician who sings like Pavorati, and plays Violin like..that one guy thats famous whose name I cant think of right now !, has a way with kids, and has the biggest heart of anyone i know.

We became friends with the Crocheron's several years back when their boy, Nate, was younger.

Nate used to come over and swipe Coke's outa our fridge and hang out w/ us !

They are like family to us now.

Vickie, the CEO of their family, tutors Marky a couple of days a week to keep him caught up with school stuff. She is an angel in so many ways to us. PLUS, she's a RED-HEAD ! Of course she's an angel !

So today, the 18th...Ken, the Colonel,.....

HAPPY BIRTHDAY ! And thanks for carrying us. You are loved and appreciated..

Marky's troop.

Friday--

Marky CAME HOME !

After all the tests and hand wringing and coins tosses, the little warrior was released.

The surgeon was not comfortable opening him up, without more convincing evidence. Thats good....convincing evidence is NOT good.

Marky was referred to an "integrative medicine" Doc who deals with chronic pain .

The colonoscopy that showed some weird stuff is now being deemed a mystery. None of the other tests supported what the colonoscopy showed.

As always.....a mystery !

But Marky is home and cheerful. He hasnt eaten any solid food for 3 days, just liquids. So today he's eating well, courtesy of aunt Lori.

We will be home for Christmas ! No need to transport Marky's portable chimney ( from last years stay) up to PCMC. Markys cousins crafted the beautiful, authentic-like chimney, complete with stockings, simulated wood fire and brick -like motif !

We will continue to enjoy it at home !

Dont believe the "sad" face. He's been playing "HALO", the x-box game for 2 hrs straight with our home teacher !

He's just tired from killing everything !

Wednesday with the "Champion"---

Waiting for the docs to decide who's going to do the surgery and when.

They want the same surgeon that opened him last year (Dec. 23) to be the guy that goes in again. He remembers Marky and the complex maze of fibrosis covering everything.....makes sense.

EXCEPT....this surgeon is either got his sched. full, or is off, or whatever the reason. So the ranking officers are doing what they do best...

wringing their hands and tossing coins !

The Barium Enema was excrutiating for Marky. We handled it by "leaving" the hospital and pretending we were on Ken Crocherons awesome boat ! We were in the boat cruising Bear Lake with the wind in our hair. I bawled my eyes out at his courage and discipline. I used up 8 million tissues while i stood at his side trying to comfort him. ....it was him who kept saying....."we're on the boat mom, we're on the boat ."

Then around 6pm they did an MRI (un-sedated!, for all you chickens who have to get zonked to go in "the tube"). Again he was a champion.

His IV blew and had to get a new one poked. He had to hold his breath for 30 seconds a ton of times for each sequence of images....WHILE he was trying not to throw up, AND was in immense pain !

Later last night our Bishop came . He ALWAYS shows at just the right time. He gave Marky a beautiful blessing .

In the blessing, he referred to Mark as a "Champion of Faith" that is here to teach us all.

The Lord does know us.......Especially this sweet child.

MARKY IS BACK "IN COUNTRY" AT PCMC ---

Doc's have admitted him. We are waiting to the guys to come get him for the Barium Enema any minute. Then, later today, they will do an MRI so the surgeons have every opportunity to know what they're going in to do.

The surgery will likely happen tomorrow.

He is being made "comfortable" with IV Morphine to finally get relief from his pain.

Im finally getting "relief", now that he's relieved from his pain !

Aunt Lori will take over as "Aunt Lori" always does. She will scoop up Sam and Scotty and throw em in the mix with her family.

Thanks for all your prayers and support. You ALL mean so much to us.

Will keep you updated.

Markysmom