Sunday, June 27, 2010

Hi friends---

Last week was supposed to be Marky's EGD scope thingy....

It didnt happen. The insurance company decided that they wouldnt
pay for their portion of the scope because Primary Childrens Hosp isnt

They offered to pay a whopping 25 percent of the huge, i'm sure, bill...
They said if we elected to go to one of THEIR provider's, at another facility
they might pay 80 percent ! !

A facility that doesnt specialize in "Childrens diseases", and a Doctor that doesnt
even know Marky ! ! !

So i said forget the whole thing ! This ridiculous call came while i was standing
in line at the airport last Friday to make an emergency flight to Phx to tend to
my older brother who was on life-support in the ICU from complications from
a stroke. He's only 53.

There's no shortage of wrinkle-producing, gray-hair inducing, stress-eating opportunites everywhere you look !

I MAY agree to let some stranger-danger doctor scope Marky at an "adult" facility this week. Markys doctor, Dr. Pohl, said to go ahead and do it.

So it's scheduled for THIS wednesday at Wasastch endoscopy. I'm disgusted with
insurance companies, telling doctors how and where they can practice.

Doctors take an oath to "Do no harm" when they become official. The insurance
companies are doing all the "harming" by not allowing the patient to be treated
properly and appropriately and timely by dictating every move the doc. makes !

And some people think this will be remedied by "Socialized medicine" ! All these decisions will then be decided by "Government know-it-alls" ! Patients like Marky
will most likely be put on a waiting list and priority list !

We will undoubtedly be forced to sell more than our "Harps" to go out and privately buy services to save the lives of our children and loved ones.

The day before i found out my brother tried to die, I sold my beloved Harp to keep us in our home.

I bought my harp 30 years ago with my OWN mom and dad help. It has been a joy in my life and a source of peace and beauty, a bit of "heaven on earth".

However, there could be no JOY or PEACE or BEAUTY without my children and their comfort.

I always say that i would MOVE "heaven and earth" to take care of my boys.....

Last week, i SOLD "heaven on earth".

yo peeps greetings from marky

Tuesday, June 22, 2010

Tuesday June 22nd in Marky's world---

On Saturday Marky was invited to be a VIP at "Fort Douglas Day's" annual parade and open house.

Fort Douglas is an Army depot up by the University of Utah..

He was treated like a king. Got ride up on a big 'Deuce and a half', which is a big army truck that transports guys and big guns and all that cool stuff.

He got to shoot off a cannon of some sort. They told me the caliber, but it didnt register in my non-guy stuff brain. But it sounded big !

He also got to shoot a machine gun and ride in their parade !

LUCKY ! ! ! All this is part of the Make-a-Wish happenings that are starting to come together !

The guestimate of the Jeep arrival is somewhere around 3 wks from now.
We are Sooo excited ! As you can imagine.

Tuesday, June 15, 2010

TUESDAY June 15, 2010

Just reporting in on the latest happenings with Marky Jeanes.

He's been mostly well. Just a small cold/cough, and intermittent
"crappy-ness". But still keeping his chin up and staying positive.

The Make-a-Wish "granters" have resumed the search for a Jeep now that the Army mission has failed.

I located quite a few jeeps on the internet for sale from "civilians" and gave the info to the "wish granters" . They assured me that they would move forward and take care of things so I wouldnt have to.

I told them i was perfectly okay to pursue the "wish" if they hit any snags. We'll see what happens.

In the meantime, it's like the "tooth-fairy" scenario every nite at the MarkJeanes house ! He goes to bed each nite wondering if "Tomorrow" will be the day ! ? ? ! So he is very anxious. And if He's anxious...I'm anxious !

Next week on the 23rd of June, Marky goes up to PCMC to get the EGD scope thingy down his throat to check the cells on the inside of his stomach. They're looking for Celiac disease stuff, and any other clues that may help solve the mystery !

I believe he will continue to be a mystery and just be "managed" as a kid with a weird "auto-immune" disorder that happens to be responding to a "hail-mary" treatment idea............which i'm SOOOOO GRATEFUL FOR !

Saturday, June 12, 2010

Hi Everybody !

Thanks for all the great Birthday wishes !

As most of you know, i share my birthday with my twin, Lori.

She entered this world 5 minutes after me. I was grateful for the
companionship, as i had three (3) older brothers waiting in the wings
to torture a little sister !

I turns out that wasnt the case at all. Our three brothers adored us
and still do. We think they're pretty cool too, with few exceptions !

Yet, my little sister, Lori, was and continues to be the one that carries
the weight of our sojurn !

She rescues without hesitation.

She answers my relentless cries for help.

She offers support and a shoulder to cry on.

She understands charity and pure love.

She demonstrates charity and pure love.

She is all that i hoped i could be.

She is all that i wished i could be.

I owe her an eternity of gratitude for her companionship. And i will
ever be her loyal envious friend and sister,

Happy Birthday, Lori ...........Love Lyn.

Wednesday, June 9, 2010

Hi to all of Marky's buddys

Summer's in full swing mostly. Markys is trying to keep up with the
neighborhood kids running back and forth house to house !

Wish I could run with em ! Dont you !

He is in great spirits, yet asking every day if his "Make a Wish" is coming soon........

Speaking of that....i received word that the "Army Jeep" wish had been
denied by the U.S Army. Apparently the army will NOT allow any equipment to be allocated to any civilian for "liability" reasons.


This Life's a huge liability.

What if a young boy with an uncertain future were to actually have some kind of repreave and respite from his "crappy" feeling day to day life of
pain and limitations ? ?

Now the walls are caving in on this young boys living situation, ie, home and community of friends and family and the bank wants to put us out.

How about taking a risk, ARMY GUYS, and weigh the options of your
LIABILITY of helping a young boy get his wish of some scrap metal
frame of a beat up, non-working army jeep !

The Army continuously weighs options and liabilites and outcomes.
They continuously take risks for the good of our people and precious

But they cant take the RISK of putting a dilapidated old jeep carcass
in a little kids' backyard and "make his wish"

I have EVERY respect for the U.S. armed forces. Our freedom and opportunities are a direct result of their risks.

I just think we as a society have over "liabilitied" ourselves into a little tiny corner .

A corner called "INABILITY".

If any of you know of an old jeep that I can purchase and paint/camouflage to look like an army issue, please contact

Wednesday, June 2, 2010

Wednesday June 2

Marky's Remicade experience went "great"----in his words.

The IV "blew out" the vein in one hand, so they moved to the
other hand.

I asked him if it hurt when the vein blew, and he said,
"No, it kinda tickled" ! Oh come on ! !

I think his Dad told him to say that so I wouldnt freak out.

Marky spent the Memorial holiday feeling "crappy" and tired
and just plain worn out-looking.

Yet, overall, it was an uneventful weekend.

Uneventful is FANTASTIC in the Jeanes Home !

It one went to the hospital or Dr. !

Scott returned from a weekend with his Dad, Mike. HE probably
couldve gone to the Dr. to stitch up the gashes on his shin from
trying to negotiate a river bed with his mountain bike.

Hope you all got some relief from your everyday rif-raf too.

love, Netti