Saturday, August 26, 2006

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.

Tuesday, August 22, 2006

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