Brianne Shelton

I never had the opportunity to meet this young woman. She worked for the medical organization that I contract for.

I read about her in the health system newsletter...and was saddened about the loss of life.

Her plane crashed en route to do charity work...fulfilling what I believe to be a very noble cause...providing medical care to those in need.

My most sincere condolences to Brianne's family...immediate and extended.

Just reading about her in the newletter...and again online...she will be missed.

Her website is down right now. I hope it will be back up soon...I would love to read more about her...not morbid curiosity...I never got to meet her...perhaps I can meet her this way.

Visit:
http://www.brianneshelton.com

Click the title for the local news clipping.

Florida's Sadness

I am so disgusted by this crime. A suspect is on the loose out there...after killing four people...2 of them children. It just makes me sick to think that this person is still on the loose.

Can you imagine?

The mother was clutching her children tightly under her...as she herself died in the fetal position...doing what every mother would do...protecting her children.

WTF

Is there a book of manners out there regarding photo taking?

If there is, hook a sista up!

Once I read it and master it...I will surely school everyone else on it.

When I got married, my photographer had no qualms about telling you to get out of her picture...she pissed off a lot of people that day...

I was just thinking about her today...while at the beach with my boys...a woman was in my photos...I would have never told her to get out...it's a freaking public beach...but if I knew I was in someones picture...I surely would be inclined to get my fat ass out of it.

5 Minute Monsoon

Alright now, that's a bit of an exaggeration...to say the least...but one minute it was sunny and then the next it was pouring!! Before the downpour...Kai and I spotted a rainbow...

:)

My Anutie Linda in Hawaii says that the islands is home of many rainbows and in each rainbow, we see Nana (her mom) smiling down on us.

So, I had to take a photo...or 2....

Hi Nana!!

Feel Like Whining About Life? Think Again

Nick is amazing. Jenn gave me a DVD of Nick's sometime ago that I have never watched. Not because I didn't want to...but to be honest I was afraid of being moved.

Does that make sense?

Read Nick's story.

I am off to watch his DVD.

He's speaking tonight at Point Loma Nazarene. It's free to the public...and I just know it's going to be hell trying to get in.

I heard about it on KOGO today on my home from Kai's OT appt.

Check him out. He's in Cali all week...

In Memory - We Will Not Forget

Scientists and engineers simulate jet colliding with World Trade Center from PhysOrg.com

Researchers at Purdue University have created a simulation that uses scientific principles to study in detail what likely happened when a commercial airliner crashed into the World Trade Center's North Tower on Sept. 11, 2001.

[...]

Scientists today recreate the collapse of the WTC twin towers...replicating a jet crashing into the buildings. Full Text article above.


Also visit the attached link for Jersey photos.

To all those families directly affected by this senseless act of terrorism...I send you my condolences.

The Seven Daughters of Eve - Wikipedia, the free encyclopedia

Looks like we are all truly related...

There's a theory anyway, that is that 7 clan mothers who are daughter's of Eve. These 7 women, share the same mother...and each has their own mitochondrial DNA profile but all can be linked to the one woman, Eve.

Crazy huh?

Just makes me realize that this whole genetic thing really isn't that hard to believe...you know, the numbers that are crunched to calculate those affected by certain genetic condions...like CF.

It's not so far off simply because we are all related.

Craziness huh?

The Seven Daughters of Eve - Wikipedia, the free encyclopedia

Searching for a Cure...funds for a cure that is...

I am not a fan of search engines other than Google. I am major Googler...use it at least 100 times (if not more) per day.

It's fast and I get what I need every single time...I am a Google Master.

Google doesn't pay me to search though. Nothing against Google at all. I still love Google...but check this out...

By using Goodsearch and selecting ".CFF" include the period...you would come up with the Cystic Fibrosis Foundation in Bethesda, MD. They are the headquarters for all things CF.

Kai has CF and I would love to have a cure for this disease so he can outlive me! :)

Please earn Search for the Cure...but searching using Goodsearch...be blessed knowing that every search generates a penny closer to a cure...sure...may not seem like much at all...but when you add them all up...it's still that much closer....


Charity or School Size Number of Supporters Average Searches Per Day Estimated Revenue/Year
Small 100 2 $730
Medium 1,000 2 $7,300
Large 10,000 2 $73,000

I Killed Shamu

While on my way in to work tonight, driving down the 15 South, traffic started to really slow and nearly stop because of debris in the road. I couldn't tell what it was right away, until something popped up and I just ran it over.

It was what appeared to be a stuffed Shamu... The unmistakable black and white whale shape...jumped up and I struck it at a moderate rate of speed...stuffing flew everywhere...

I also noted several other "babies" in the road...looks like maybe someone tossed it out of the car, lost donatable items, or maybe someone just has a wicked mean sibling that was mad...or maybe better yet...

Maybe they had a Dad like mine... Don't get me wrong..I love my Dad. He's grown up so much through the years...when we were young though, he had ZERO tolerance for stupidity/insubordination...or really anything that didn't go with his idea of how kids should act...With that being said....

I recall one time when my Dad took us camping in the mountains. My brother (younger by 1 year) had a brand new Tonka truck. We were playing with it at a campground in the dirt, while my Dad made us lunch. I recall the lunch vividly - peanut butter and mustard sandwiches...yah, it sounds nasty but I remember it being quite yummy. Although, I can't say I would recreate that same culinary delight in my kitchen any time soon...

Well, my brother and I started bickering about sharing the truck...mind you the damned thing was his in the first place...and I had to play with it. A tug of war ensued...then along came Daddy.

He took the truck from us and shouted at us...something along the lines,

"If you two S-O-Bs can share the G-damned truck, then neither of you can play with it."

He proceded to pry the truck from our clenched hands and he demolished that damned thing into a couple of pieces and most impressively flat as a G-damned pancake!

Mind you, this was early 70's and I could swear I recall a commercial about Tonka trucks being super strong and having the ability to withstand incredible amounts of force...like an elephant standing on it ...or was that Samsonite? I just knew my Dad was freaking Superman or something like that since he could do that to a TONKA!

From that moment on, I knew we couldn't let Dad see us bicker about a trivial toy...that is, if we ever wanted to see it again as it was meant to be seen. We still bickered and I think we still had shit tossed out or destroyed I am sure...but I can't recall any but this one right now.

So killing Shamu tonight, brought on this flashback...because I could just see my Dad -

"If you two can't share Shamu and all these other f**king dolls/animals than no one gets it!!"

As he chucks them out the car window one after the other....

Poor kids...

I am sorry I killed your Shamu...

Cadbury's Roses

You know, I love children's books. Especially ones that have a message that everyone can get.

This particular story is written by a mom of a cf'er.
It's for kids with cf...to understand their 65 Roses better.

Enjoy

Untitled Document

Lung-pancreas transplant is 1st of its kind | IndyStar.com

Lung-pancreas transplant is 1st of its kind IndyStar.com

Wowee Zowee!! Isn't this so incredible?

I didn't realize it was the first of it's kind...considering I have had a strong feeling this was possible and thought this was something done normally....

I guess not! This is truely amazing. I can't say it's a medical breakthrough, since that would be a cure for cf...but it is a medical milestone!

Acceptance

Acceptance is not submission; it is acknowledgment of the facts of a situation. Then deciding what you're going to do about it.
Kathleen Casey Theisen

When you think about all the ways things are, all the ways things could be, and all the ways things should be, acceptance of the way things are is the best way to deal with a situation.

You know the familiar sayings that revolve around life not being easy and life being a bitch...Well, I believe it's what you make of it. It is what it is.

I had my car worked on the other day and my mechanics wife Judy is the biggest sweetheart that you could ever encounter. It has been over a year since I last talked to her. Our last conversation was about Kai and we talked about him while standing in the local grocery store.

Life has zoomed right by...

She asks me about my relationship with Jerome...and tell her the truth.

My relationship with Jerome couldn't be better. We have our days and moments, but with the diagnosis of Kai, things just don't seem to be that big of a deal. It put things swiftly in perspective. Sure I still get annoyed when he's bugging about the laundry or the kitchen, or my socks on the floor....(Who's the nag?) Well, I think everyone who has ever been in a relationship knows all too well what comes with that. Tolerance. Before you commit to anyone, you have to decide if the things that annoy you about that person are so bad you can't live with them, well then it's time to move on. If you can, and you like the person, love the person...not necessarily giddy-in-love (that goes away not matter who you are with) but just want to share your life with that person, then go for it.

That's what Jerome and I did. We accept each other for who we are...and who we aren't. I am not Susie homemaker - Martha Stewart wanna be. He knows that, accepts it...for the most part...and that's that. What relationship/partnership couldn't do with a little more sex and a lot more money...or is it the other way around?

It is what it is.

Clinic Visit 8/24

Well, Kai is 11.33 kilos. He's 33.5 inches tall. His lungs are perfectly clear.

We started TOBI for a + airway culture. Pseudomonas as I mentioned previously is bad for cf-ers. It's bad for anyone with a chronic respiratory condition but especially those with cf. The thick mucus in the lungs hold onto the crap and won't let go...so TOBI will hopefully kick it's butt....

So, Kai is doing great...we are still following his high cal diet so he can get chubby.

It's now:
4 ounces of whole milk + 4 ounces of half and half
Jar baby food with oil (we use Omega oil with all the EFA's he needs for his brain) or we just put the spreadable butter in it (we like the Land O Lakes spreadable butter)

We have been referred to occupational therapy so he can learn to eat. I think we have been so hard on him for putting stuff in his mouth, we missed a learning milestone for him to put food in his mouth....

*sigh*

So, OT it is...we can get him in there and they can teach him how to eat.

TOBI is going rough, we get started ok but half way during the treatment, Kai gets antsy and wants to get down. This is just something he's got to get used to and his behavior is completely normal. He's just being a toddler.

Perspective

Thanks Camille for sharing this information about the movie with me. I haven't seen it yet, but just reading the story behind the movie moved me.

This is from the website:

ABOUT THE FILM
Featuring fierce rivalry, stopwatch suspense, and larger-than-life personalities,
MURDERBALL, winner of the Documentary Audience Award and a Special Jury Prize for
Editing at the 2005 Sundance Film Festival, is a film about tough, highly competitive rugby
players. Quadriplegic rugby players. Whether by car wreck, fist fight, gun shot, or rogue
bacteria, these men have been forced to live life sitting down. In their own version of the
full-contact sport, they battle each other in custom-made gladiator-like wheelchairs, pursuing
gold medals and proving to themselves and to anyone who sees them in action that there is
life after disability.

From the gyms of middle America to the Olympic arena in Athens, Greece,
MURDERBALL tells the story of a group of indomitable, world-class athletes unlike any
ever shown on screen. It will smash every stereotype you ever had about “gimps” and
“cripples.” It is a film about family, revenge, honor, and the triumph of love over loss. But
most of all, it is a film about standing up, even after your spirit, and your spine, have been
crushed.

Based on the article by Dana Adam Shapiro, MURDERBALL was co-directed by Henry-
Alex Rubin and Shapiro, and produced by Jeffrey Mandel and Shapiro. During their long
and intense collaboration, the three filmmakers drew on their individual skills to form a tight,
proficient team.

In the simplest terms, all three shaped the story by bringing distinct talents to the project.
Shapiro, a former magazine editor, dealt directly with the characters and coordinated the
music. Mandel handled many of the business logistics, including rights acquisition and
planning the shooting schedule. And Rubin, who had extensive film school and
filmmaking experience, shot the film and oversaw the technical aspects. “But we all did
a little bit of everything,” says Shapiro, “which is why it is a film by the three of us.
Rubin did interviews. Mandel helped with music. And I shot when we needed two
cameras.” In fact, their creativity and ingenuity knew no boundaries, as the determined
filmmakers labored to make their dream of MURDERBALL a reality.

MURDERBALL addresses the common misconceptions many people have about
quadriplegics. It is important, for example, to establish that a “quad” is a person who has
partial impairment of all four limbs – a quad does not have to be an invalid. As the film
shows, with therapy and the help of wheelchairs, quads can lead independent lives. They
can drive, cook, have sex, and as the opening scene of the film illustrates, put on their pants
one leg at a time, just like everyone else. But the quads who had been athletes, adventurers,
or risk-takers -- or those who dreamed of this kind of life – despaired that they would never
experience extreme physical activity and the rush that accompanies it, until they learned
about Quad rugby. Hearing about Quad rugby gave these young men hope: actually playing
the game gave them a renewed sense of purpose in their lives.

The subject of MURDERBALL, disabled men finding meaning through their involvement in
a sport, could easily have been the basis for a film that was soft and inspirational instead of
hard-hitting and dramatic. But filmmakers Shapiro, Rubin, and Mandel were determined to
avoid the sentimental stereotypes that generally surface in stories about the handicapped. “I
hate inspiring disability movies,” says Rubin. “If I were to see a film about disabilities on
television I’d probably switch the channel.” Adds Shapiro, “We never wanted to make one
of those up-with people, pat-on-the-back, good-for-you films. You know, ‘Look at the
inspiring cripples.’ A lot of stories about people overcoming obstacles are unintentionally
condescending.” Their objective was to make the audience focus on the men, not their
handicaps or their wheelchairs. “I’d like to imagine that people watching the film are
thinking, ‘that guy is so cool,’ or, ‘he’s a jerk,’ just the way they’d react to any on-screen
personality, instead of ‘I’m so proud of him,’” Mandel explains.

To achieve this goal, the filmmakers made a documentary that followed the rules of fiction.
“During the shooting, we discussed fiction films, not docs,” recalls Rubin. “We talked about
movies such as THE BEST YEARS OF OUR LIVES, THE GREAT SANTINI, and
ROCKY. We tried hard to follow an old screenwriting rule: show, not tell. Instead of
bombarding the audience with statistics of how many people become quadriplegics every
year, we tried to capture the expression on newly-injured quad’s face as he was wheeled into
the therapy gym.” By emphasizing the universal elements in the story – sports rivalry and
patriotism, relationships among fathers, sons, best friends, and lovers, the ecstasy of winning
and the agony of losing – the film enables viewers to identify with the “characters” and their
situations. As the people emerge, the wheelchairs recede. “The wheelchairs are supposed to
become seamless parts of the characters, like a signature piece of clothing – not the story
itself,” Mandel observes.

The selection of these characters was crucial to the success of MURDERBALL. The
filmmakers faced the challenge of finding quadriplegic athletes who could carry the drama,
as well as bring the sport to life. Contrary to their expectations, the hardest part of “casting”
was that there were so many interesting candidates with compelling stories for the project.
They had to whittle down the amazing selection of people and anecdotes into a manageable
narrative. As Mandel points out, “The great thing about the milieu of quad rugby is that it
attracts people with strong and distinctive personalities.”

If the quads in MURDERBALL impress and inspire us – and they do – it is not only
because they have overcome insurmountable odds. Judged by any standards, Mark
Zupan, Joe Soares, and the other Quad Rugby players profiled in the film, are
remarkable athletes and even more remarkable men. MURDERBALL – a compelling,
enlightening, and even exhilarating film – is, first and foremost, their story.

*****

Ok, so I still hate cf. Just am glad to be. Just be.

CF News!

http://www.cff.org/news/news/

Looks like some breakthrough drugs are in the pipeline and already in clinical trials.

I pray they are successful.

Do you need to know more about CF?

http://www.cff.org/about_cystic_fibrosis/

Go to that link above and you can feed your brain with all sorts of information about CF.

:)

Donating Pancreatic Enzymes

Ha! If this could only be possible. I truly believe that I am oversufficient...I gain weight quickly and easily. Unlike Kai.

They say that Kai is on the small side even though for his age he is the 25 percentile. For his height, he is in the 80+ percentile. They want to close the gap.

So, lucky Kai gets to feast on heavy Whipping Cream, whole milk, and half and half.

Lucky guy.

He's got a clinic appointment on Thursday - so I will be sure to let you know the outcome of that. Last visit he was a whopping 24 pounds...

WOO HOO!! Thank you God!

Yep, I thank God for giving me the blessings of my husband. He signed up for the group insurance policy at his work so we have insurance coverage now. They have covered Kai's medication - TOBI.

TOBI is Tobramycin in a liquid form, specially formulated for inhalation therapy. It is THE ONE that combats Pseudomonas aeruginosa (Pa). Kai's last cf clinic visit resulted in not only a new diet but a positive airway culture too!

So, the UPS man should be ringing the bell any moment to hand over the little box of ampoules for the Kai-man's nebulizer treatments! The medication is almost 3600 dollars for ever month of therapy. He will be every other month for the next 6 months. That will hopefully knock out the Pa.

Now, it won't knock it out for good. The type he has is nonmucolytic which means it is the one that comes and goes. The mucolytic type is the one we are trying to avoid since that is the one that doesn't go away....It comes and stays and does some permanent damage to the lungs.

So, TOBI it is...

I think we should name our next dog TOBI. That's kind of cute.

Well, thanks for tuning in.

Off I go to take a nap with the little chunky monkey.

-M

I belong to an online support group. CF Infants and Toddlers at Yahoo groups. A new member just joined and I was very touched to read her story about her daughter and their trials and tribulations dealing with CF.

CF Sucks.
I hate it.

Heather's Thoughts and Updates

With all the dog gone screening healthcare does, would you believe we have had an active case of TB on a Navy ship? When I was in the Navy, this would have been caught sooner. Even the IDC's on the ship obviously didn't consider this a likely diagnosis.

This is unfortunate for the estimated 500 exposed. Hopefully they will only manifest a positive PPD test and NOT an acute case of TB. TB, while treatable still can cause significant damage to healthy lung tissue.

Tuberculosis Quarantine