Lessons Learned

So obviously we’re still tweaking a few of the steps in Gavin’s treatment times :)

Learned a few things this weekend

1. it’s much easier to attach the tubes to Gavin’s vest before I put it on him (also results in fewer bad words!)
2. If you leave the patio door cracked a bit too far, and forget to make sure the screen door is latched…your dog will escape. Luckily he ran back home immediately after I started calling his name (a first! whew!)
3. Do the night treatments immediately before bedtime. He is so relaxed after the vibrations of the vest that he barely whimpers when you put him in his crib.
4. If you let him play around with Bubbles the nebulizer and let him think it’s “fun” to have on his face, he’s much more willing to keep it on his face throughout the entire treatment.

Umm…what are those big tubes?

Is a question I have received from several people after posting pictures of Gavin sitting in his little chair doing his breathing treatments.

So here it goes, I am going to attempt to explain how this machine works & what it does. Do not expect any exciting medical terms, just expect some “Jen-isms”

These are all the pieces needed to perform Gavin’s two 1/2 hour breathing treatments we perform daily.

• Nebulizer machine: that little noisy machine that runs his inhaled medications
• Bubbles: his nebulizer contraption that contains his medications and is as kid like as possible, trying to make things as “fun” as possible
  
• The Big White Thing: the machine that helps us run the desired programs for his treatment sessions & controls the air intake/vibrations the vest performs
• Big Tube Things: these tubes connect to the “Big White Thing” & to his Vest, and blow air into the Vest making it vibrate/shake
• The Vest: Inflates with air and vibrates at such a rate that it shakes the sticky mucus (a result of CF) free so he can breathe more easily
• That Gray Wire: What powers up the “Big White Thing” and what Gavin consistently tries to unplug & plug in & unplug & plug in…

So every morning and evening, we unpack the handy dandy bag that was provided to us by Hill-Rom (remember this?), and get set up for his treatments. Often I give Gavin “that gray wire” and watch him attempt to plug it into the back of the machine (not an outlet!) while I prepare his Bubbles nebulizer. Can never start teaching him how to do his own treatments too early right?!?! :)

What goes into the nebulizer you ask? Well, it’s a combination of two medications.

1. Albuterol
2. Mucomyst (which we lovingly call the sh*tty smelling stuff)

The Albuterol comes in a box filled with individual vials, this part is s.i.m.p.l.e. Twist off the top and dump it into the neb container (Bubbles).

The Mucomyst is a bit different. We get it in 4 mL vials and use 2 mLs of it each session.

Out comes the handy dandy syringe…

where I carefully measure out the amount needed (2 mL)

And add it to the 3 mLs of Albuterol.

**Side note…do NOT spill this or let Gavin dump it out on the floor. It will make your living room stink for a day or two…or more…not that I would know this from personal experience… :)

Now we’re ready to go. At this point I have to balance the nebs so they don’t tip over and spill…

Get Gavin snapped into his Vest…

 
Attach the hoses to their designated spots on the Vest (this would never result in me swearing when I can’t get them to connect)

And then remember that I forgot to crack open the patio door & start up the ceiling fan to try to prevent the smell of the Mucomyst from sticking around.

Now, (again, I would never swear in this circumstance), I have to put Gavin down, cross my fingers that he doesn’t try to run away while everything is connected correctly, grab the nebs so they don’t get spilled (or dumped), run & open the door, start the fan and sit back down to get ready to go.

At this point, I never realize that the tv remote is on the other side of the room. Again, no swearing occurs…

Ok, ok, ok so those events don’t happen every time but they do happen often enough that I get really mad at myself for not remembering to correct my previous mistakes!

Now we’re settled…everything is connected, the door is cracked open, the ceiling fan is whirring away, the tv is in my hand…I start the machines…

Wait a minute…NORMAL or OPTIONS? Umm, I’ll take the ‘Normal’ life for $500, Alex.

You know that made you laugh. Ok, moving on… :)

We start the machine

The vibrating begins

We turn on this

or this…

 Thank goodness for Cable On Demand…my lifesaver.

And then…we sit and hang out for a half hour. The Vest shakes at different Hz levels and intensities for six, five minute intervals (each interval is a different Hz level) for a total of 30 minutes each treatment session. CF results in the build up of sticky mucus that lines the lungs, along with other important organs, and the purpose of the vest is to shake the sticky mucus free. This tries to prevent bacteria from sticking around (resulting in infections) and allows him to breathe more freely.

Sometimes it puts him to sleep, more often it doesn’t. But each and every time I find myself surprised that my extremely active one year old calmly sits for a half hour and patiently watches his favorite television shows.

**Side note: the people that created Yo Gabba Gabba had to have been on something. Seriously.

Sometimes he’s even calm enough to sit in his own chair by himself.

But more often he’s not…

It really isn’t a difficult process. In fact, it’s easy compared to the manual CPTs we used to perform. Not that performing CPTs is a difficult task…but try to convince a baby/toddler to remain still and allow you to pound away on their chest for 15-20 minutes…? Right after they had to sit still during a 20 minute nebulizer breathing treatment…? Right.

In other words…WE.LOVE.THE.VEST!!!!

Any questions? :)

p.s. Today is pretty much the greatest day ever. It’s my birthday!

p.p.s. I changed the setting on my blog, so even if you’re not a “blogger” you can still comment, just choose “anonymous” from the pull down list & don’t forget to mention your name so I know who is commenting!

Wow.

I have the best friends in the world.

Seriously.

I love this girl.

CHECK IT OUT!

Can't tell me that didn't bring a huge smile to your face...Rebecca is the best!

Opinions, Arguments, Negativity…oh my!

Well that sure was interesting…wasn’t it?

There are a few times where I just need to get stuff off my chest, and this is often where I head to do so. Every now and then it stirs up unintentional controversy. But I truly appreciate the support I received on and off blogger (I completely understand why several people sent me private messages so they didn’t get caught up in the drama!) and no matter what, we are all fighting against the same disease.

I often struggle with the decision of whether or not to make this blog private (meaning you must be an “invited” reader to see it’s content) but each time I question my decision to remain public I remind myself that awareness of Cystic Fibrosis is a big key factor in finding the cure.

More Awareness = More Donations = New Research, Trials & Medications = Someday Finding A Cure

So, I will take the controversy & criticism in stride and continue down that path of fighting and demanding the medical field to create the medications my son needs to live a normal life. Which he is doing, and is doing quite well, thankyouverymuch!

The last comment you’ll hear from me on that last post is this, if you can’t respect an opinion other than your own, or you don’t surround yourself with a positive attitude…then this is not the blog you need to spend your time following :)

Ok then…moving on!

For those of you in Minnesota, I was just reminded of a fundraising event being held at O’Gara’s in St. Paul on Saturday, March 6th starting at 6 p.m. The 5th Annual ‘With One Breath’ will feature live music, adult beverages & a silent auction.

A fun night out, at a fun bar, that also benefits a wonderful cause?!? Sign me up!

Click HERE for more information on the night.

Can’t make it that night? Don’t find yourself traveling across the river to St. Paul? Are you free on March 20th?

Please join us at the 2010 Spring Wine-Up at the “W” downtown Minneapolis (the Foshay Tower).

Yes, that’s correct. Wine. One of my faves. And food. Another one of my faves. Score!

Several of Minneapolis’ best restaurants will be serving food and wine, along with a silent auction, to raise money for the CFF. Tickets are $100 per person ($50 of that is tax deductible!!!) and you can purchase tickets by clicking HERE or calling Gena Hughes at (651) 215-3700.

At this event you will have an opportunity to speak directly with the head chefs & can also get advice from local wine experts…how often do you get that kind of opportunity while simultaneously donating your time & money to a great cause?

We hope that you can find your way to one, or both, or one of the several other events happening in the Twin Cities! And don’t forget you can always donate directly to our team, Gavin’s Groupies by clicking the Great Strides link on the top left corner of the page.

On another note, several of you have asked me about Gavin’s Vest and how it works…I am currently working on a post describing just that, so stay tuned!

“Fatal”

UPDATE: April 22, 2010

Because I am STILL getting emails about this post, and it's unintentional controversy...I am removing it. I still have the document saved if anyone is interested.

But I will be leaving up the happy part...fun ways to donate!

Fun ways to donate

1. $27: Gavin was born on 2/7 2009
2. $7.10: Gavin weighed 7 pounds 1 ounce when he was born
3. $38: the current lifespan predicated for those with CF is 37 years, screw it, make it 38 so we can beat that battle
4. $74: DOUBLE the life expectancy for CF…Gavin’s going to get there
5. $1: Gavin has beaten this disease for one year already
6. $81.72: the number of miles, one way, we drive to our CF clinic (per Mapquest) at the University of MN
7. $2: Gavin needs his two lungs to remain healthy to beat this disease
8. $60: the number of minutes we spend each day on breathing treatments
9. $5: The number of pancreatic enzymes (pills) that Gavin takes with every meal to help him digest his food correctly
10. $100: our dream is for Gavin’s lung function to remain at 100%

(please click on the link to donate)

Wordless Wednesday

Check It Out

Now this is what I’m talkin’ about…

More proof people are living with Cystic Fibrosis

http://www.jerrycahill.com/

Playtime

Yesterday, after picking out bridesmaids dresses for my college roommate Linds’ upcoming wedding, Casey and I decided to walk around the local mall.

So of course, we had to hit up the play area.

Which was extremely crowded…but apparently for Gavin, the more the merrier.

He quickly became “friends” with another little boy close to his age, you’ll see him in the first clip crawling on the “highway.” His little friend’s dad is the man in black, who Gavin was enthralled with…possibly because he was wearing glasses?!?  But we thought you’d all enjoy a couple videos of him cruising around the play area (he’s the blonde in the orange shirt!)

Another little boy (who is wearing a red shirt) followed him around the entire time and would try to lift Gavin up to his feet when he fell, it was pretty cute :)

Gavin also has two new words:

“Wow”

and…drumroll…

“No” (sigh…)

Just keep swimming…

In the land of 10,000 lakes it’s pretty much a given that most kids go through swimming lessons at one point in their life.

We not only want him to learn how to swim, but we also want to make sure that he always feels comfortable in the water.

We’ve all seen it…that five year old in swimming class standing at the pool edge and screaming bloody murder because he is scared stiff to stick his big toe in the water…

The pictures aren’t the best as they were taken from Casey’s iPhone instead of our regular camera, and Gavin looks concerned, but I promise that he had an absolute blast!

From the second we got into the water, and even towards the end when he was cold and shivering, he had a huge grin on his face…he even laughed after we did some bobs and he went all the way under!

Swimming is a great aerobic exercise for anyone, especially for those with Cystic Fibrosis…maybe we’re creating another Michael Phelps? :)

I’m surprised that no one commented on his ridiculously pruned fingers & toes…another annoyance of CF…but it didn’t seem to bother him! So I guess…who cares!

Five more fun Thursday classes to go!

???

Have you been following?

http://65redroses.livejournal.com/

Walking…

See this hallway?

My doggy’s food & water dishes are at the end of it.
…did you know that dog food tastes really yummy?
…and that the water dish is really fun to dump all over the floor?

My mom told me I need to sit down when I eat cookies…

Right.

I would rather leave crumbs e-v-e-r-y-w-h-e-r-e.

Life’s just too short to sit still!

p.s. I’m not wearing any pants because I hate to wear pants. But I love my Robeez shoes…I cried big crocodile tears until my mom put them back on my feet. She told me I was really silly to wear shoes with no pants. Don’t be hatin’ on my fashion sense mom.

Wordless Wednesday

Birthday

Today is my mom’s birthday.

It’s a big one…one of those that end in a 0…

She’s not 20…30…40…or 50…

And she’s definitely not 70 or 80…

I didn’t just give away her age or anything…did I?!? Haha, sorry mom!

Happy Birthday Grandma Oma!

Not Me Monday!

Minnesota Edition :)

Last week, when the winter weather hit a whopping (and sunny!) twenty- something degrees… we Minnesotan’s did not shed our heavy winter coats & hats declaring it to be a sunny heat wave.  We would never decide to forgo waiting for the weather to get to above freezing temperatures to don a “spring-ish” coat on a Target run. Nope, no way! Not us!

We Minnesotan’s do not get a kick out of celebrating Valentine’s Day weekend at an outdoor ice bar…

 
…located directly next to a indoor warm and cozy martini bar. We of course don’t find it enjoyable to try to make conversation with chattering teeth while attempting to hold a drink steady with shaking, shivering hands. Nope, not us!

We Minnesotan’s would never get the giggles when we see other states shut down their schools when they receive less than an inch of snow. We are way too “Minnesota nice” to ever do such a thing! We would never shove our kids out the door to catch the bus, that is still running on time, when six plus inches of snow fell the night before. 

We Minnesotan’s with young children would never count the days until our kids are old enough to go shovel that snow all on their own! I mean…that’s why we have kids, right?!?

65 Roses???

Why do you hear so many in the CF community refer to the disease as 65 roses? Why is a purple rose so symbolic to our cause?

Read on…

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

65 Roses^® is a registered trademark of the Cystic Fibrosis Foundation.

This story was taken directly from the Cystic Fibrosis Foundation website. For more information on Cystic Fibrosis, please visit www.CFF.org

Eva’s Love

I was debating on whether or not to post this video…

I know that it will be hard for some friends & family to watch…

But this is the reality of Cystic Fibrosis. This is the reality of what this horrendous disease does to it’s young community.

And I believe that it is essential for the entire world to get a glimpse of Eva, her strength, her courage…her love.

The majority, if not all, of the CF community seems to have caught wind of this amazing video clip. This young woman is wise beyond her years and has somehow accepted her fate with a smile. She is much stronger than myself and there are many prayers headed their way from our household.

If you want to view the video I have posted it below, or click HERE to see her entire blog.

*Just a warning, she is saying goodbye, so make sure to grab some kleenex.*

Why do I post this video on Valentine’s Day you ask? Because Eva’s heart is filled with love, even in the most difficult of times…I don’t think I could find a better clip portraying love in a better way if I spent a lifetime searching…

Please donate to our cause. You will be helping not only our young son, but thousands of young lives around the world.

We NEED a cure for 65 Roses…

Life As Art

"Life is pure adventure, and the sooner we realize that, the quicker we will be able to treat life as art; to bring all our energies to each encounter, to remain flexible enough to notice and admit when what we expected to happen did not happen. We need to remember that we are created creative and can invent new scenarios as frequently as they are needed."

- Maya Angelou

Emily

This girl is pure inspiration. Her name is Emily and she is a prime example of how CFers are changing the way we think…no longer are they dying from CF, but they are LIVING with it.

She ran half marathon in Miami on January 31st, along with another cyster (CF sister) and fibro (CF brother) who has had a double lung transplant.

They also raised twenty thousand dollars for CF!

Click HERE to read about their day.

Heck, I’m not sure I could even run 3 miles anymore…much less a half marathon…and I’m the one that is supposed to be “healthy!”

Go Emily!

side note: she is also enrolled in the clinical research study for the new Vertex drug, which could change Gavin’s life & future, and has nothing but great things to say about it!

It’s a Thursday in Holland

There is absolutely nothing exciting going on around here. We were hit with a couple snow “storms” (not at all compared to what the east coast is currently dealing with) so Gavin and I have spent some time outside playing in the new snow…aka me pulling him around in a sled…but otherwise we have been laying low.

Since I don’t have a lot to share personally, I thought I’d share a blog a friend led me to yesterday….

Start with this entry (click here)

If you want to read more than just that entry of her blog click here

She is an amazing photographer and is about to head down a road that many of us never thought we’d travel.

Reminds me of a poem given to me not long after Gavin’s own diagnosis…

"Welcome to Holland"

By Emily Perl Kingsley, 1987.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wordless Wednesday (watching the snow fall)

First Birthday

We celebrated Gavin’s first birthday on Sunday afternoon with a bunch of close friends and family…

I have to say, my favorite aspect of the day was watching Gavin get to interact with the other kids.

       

Then it was present time!
As you can see I had a lot of help :)

Of course a big gift bag was a “toy”
all the kids enjoyed!

The birthday cake

 

Gavin had refused to take a nap that day, so by the time we got to the cake he was spent.

As much as we had hoped he’d dig into his little cake, he hated it!

But at least the other big kids dug in!

     

All in all, it was a great day! Thanks again to those of you who made the drive in the not so nice weather!

Now we’re off to trying to fit all this new stuff into our little abode…