you know you're a CF mom if...

...your entire meal is dominated by the sentence, "Please keep eating!"

...conversations about the frequency, density and color of poop are a normal part of life.

...your entire day is scheduled around breathing treatments.

...you secretly rejoice when your offspring asks for additional food.

...you feel weird giving your non-CF child food without enzymes.

...the words "negative culture" are music to your ears.

... you never thought you'd have such a dislike for the words "crackles" and "wheezing."

...you feel especially blessed that the Lord has entrusted this precious life into your hands.

home again, home again, jiggety-jig

Last night we (and our piggies) arrived safely home.

It is so nice to be back in our own beds,

eating our own food,

walking barefoot on our own floors,

and relaxing on our own couches.

Ahhhhh!

Sam is only relieved that the needle part is over.

Because when he wasn't doing this...

He was playing games

and doing crafts

and tormenting the hospital staff with fake rubber snakes.

And he was doing this...

hanging out on the window ledge (we were on the 8th floor)

and watching all the vehicles and people below.

Or, watching the helicopters land on the helipad of the hospital across the street.

He was fascinated with both!

And this..

opening presents (Tuesday was his birthday) from us and the hospital staff.

We already had a party for him before he was admitted to the hospital, so we just had a few small gifts that we brought to the hospital for him to open.

But the hospital!

Everytime someone new arrived, they came bearing gifts. 

He received a book

and a puzzle

and a couple of stuffed animals

and a craft paint kit

and  a $50 gift card to Toys R Us!

And, they gave us a free birthday cake.

And, all the nurses came in and sang "Happy Birthday" to him.

I think he's going to want to have his birthday at the hospital every year now!

isolated

Well...

there's good news

and bad news.

The good news is, that Sam didn't have to have the bronchoscopy (which means he wasn't put under general anesthesia and didn't have any invasive procedures).

The bad news is, that he has a bacteria that is highly resistant to common antibiotics. And, although it doesn't seem to be resistant to the antibiotic that Sam is on, it could cause serious problems for other patients with weak immune systems.

So,

Sam is in isolation.

He cannot leave his room.

No play rooms,

no air hockey, 

no walking around to get rid of all his pent up energy.

He is literally bouncing off the walls!

Bouncing on  the bed,

bouncing on the couch,

and bouncing off the huge window ledge that looks out of his room.

The physical therapist was concerned that he wouldn't get enough activity.

Her fears have been laid to rest.
The kid has been circling the room non-stop!

Fortunately, it looks like we may be able to go home Thursday.
So, hopefully only one more day of this.

I'm keeping my fingers crossed!

a necessary trip (and the winner)

The winner of the Charlie Church Mouse software is Lindsay!


Please email me with your info and I'll get the program mailed off to you ASAP!
Congratulations! I hope your little ones enjoy the program as much as Sam does.

In other news...
Monday we will be heading to All Children's Hospital to admit Sam for I.V. antibiotics and a possible bronchonscopy.
A few weeks ago he had a constant cough and an x-ray showed inflammation of his lungs.
The doctor also heard significant crackles (crackles=infection).
After a triple course of oral antibiotics, he still has evidence of an infection in his lungs.
The doctor is not sure what is causing the infection (all cultures have come back negative) so, off to the hospital we go to get a better idea of what's going on.
Our prayer is that they will be able to identify the infection and knock it out with a common I.V. antibiotic.
If all goes well we will be in the hospital for 3-4 days and then come back home to finish the I.V. here.

Sam is actually really excited about going.
Last year when we went, he was in heaven.
Aside from the I.V. insertion, he had the time of his life!
There are video games and movies,
air hockey and board games,
crafts and musical instruments to play with.
This year we will be going to the newly built hospital, so I'm sure it will be even more fabulous!

And, he gets to order whatever he wants to eat, whenever he wants to eat it!
Pizza for breakfast,
pancakes for dinner,
slurpees and nachos and ice cream, oh my!
Last time, he got so used to ordering off the menu, that when we came home and he asked for pizza (I told him we didn't have any) - he asked to see what else was on the menu!
Gotta love him.

Anyways, please keep us in your prayers as we head out.
We will be bringing Ava with us too.
And, although Marko will be able to come up Monday and Tuesday,
it may get a little challenging to keep a 10 month old off the floor and occupied for the whole stay!
Once Marko is gone I'll definitely need your prayers.

I'll keep you posted on our progress.
And hopefully this will end up being a very short, uneventful visit!

kicking and screaming

I have a confession to make.

I did not intend to home school my children. 

In fact, I initially loathed the idea for several reasons.

1. I was home schooled myself and I saw first-hand the time and effort required to do it right. 

I did not want to spend the time and effort.

2. I dreamed of the day that my little darlings would trot off to school so that I could...

have a spotless house?

be a lunching lady?

pursue a new hobby?

I don't know. 

But it was going to be glorious!

3. I was am scared. 

Don't get me wrong, I'm not dumb. But I've always felt like I needed to be a MENSA

candidate to give my kids the best education possible. I have come to realize that this is not the case, and that a little fear goes a long way in keeping me accountable to do the very best that I can do. 

So, how do I now find myself a home schooling momma?

Well...Marko made me do it.

Just kidding.

Sort of.

You see, my wonderful husband has long held the opinion that home schooling would be the best fit for our family. Coupled with that fact, is the reality that (because of his CF) Sam is at a much higher risk of picking up illnesses in a traditional classroom setting.

So, being the perfectly submitted wife, I gladly obliged (um...not so much).

Actually, it took a couple of years of discussing it for us to come to an agreement. 

But in the end, I consented. 

Realizing that above all else, Marko was doing his best to lead our family in the way he felt God was leading us. And by honoring his conviction, I was ultimately submitting to God.

So, "How is it going?" you ask.

Well...GREAT! Thanks for asking.

I am knee deep in ABC's and Bible stories, 

counting by 2's and practicing printing, 

cutting and crafts, 

and it's going really well. 

And you know what? 

Don't tell Marko...but I'm actually enjoying myself!

 

before & after

Well, it's official.

The heat is here in (almost) full force.
And my shaggy, long-haired boy 

has turned into a mini boot camp recruit. 

I prefer his hair long. But, because of the high salt content in his system (from CF) he sweats up a storm and loses hydration faster than other kids. So, we have to do everything we can to keep the poor guy as cool as possible. 

So geared up with lots of Gatorade and a buzz cut...
Summer, here we come! 

raw(e): around the house

These are permanent fixtures in our home...

 As soon as I went over to Sailor & Company to find out what the new theme for her RAW(e) photo contest was, and saw that it was "Around the House," I knew exactly what my photo would be.
 
These are the machines Sam uses in his daily treatments for Cystic Fibrosis.

For those of you who do not know what CF is, it's a disease that effects the respiratory and digestive systems. Sam's body produces a thick mucous that impairs his airways (lungs) and prevents his pancreas from digesting fats and proteins. To counteract this, each day he does several lung related treatments and takes enzymes and acid-reducing meds to help him digest his food.


 Twice a day Sam straps on his VEST and nebulizer. The VEST is a vibrating airway clearance machine that keeps the thick mucous moving through Sam's lungs instead of settling and causing a breeding ground for bacteria and infection. The nebulizer delivers a host of medicines to his system in the form of a very fine mist. From antibiotics to brochodilators (meds that keep his airways open) to meds that thin and loosen the mucous. These treaments last anywhere from 45 mins. to an hour and a half, depending on what meds he is currently taking.

Doing his "treatments" are a routine part of our day. First thing in the morning and then again in early evening, on goes the VEST and the nebulizer mask. He shakes, rattles and rolls as the medicine penetrates deep into his lungs. Not that he minds the vibrating...he's busy watching DVD's or playing his favorite LEGO video game. And because these treatments continue to extend the life of my little man, they will always be welcome "around the house."  

spreading the word

For all of you CF families out there, there is a fantastic new website called CysticLife. It works kinds of like Facebook, networking families and individuals with CF. It is a great community to go to for help, encouragement and general info. Check it out! You'll love it!

every day

Not one day goes by that I don't thank the Lord for Sam's remarkable health.

After talking to dozens of CF parents, reading other parents' blogs and hearing about numerous children with CF, I am humbled by our relatively easy road. Yes, Sam takes 6-7 medications several times a day. Yes, he spends 1-3 hrs a day doing breathing treatments and the Vest. Yes, we have to constantly remind him to eat. But, in all honesty, we have it SO good. He is virtually cough-free and wheeze-free. We joke that he is healthier than his "healthy" friends, rarely coming down with colds, infections or needing oral antibiotics.

And every day I marvel at the hand of God on our little man's life. Why us? Why do we have it so good when there are thousands of other children struggling for breath, waiting for lung transplants, being hospitalized for weeks and months at a time?

I don't know.

All I do know is, that we are so very grateful for this good day. And every day.