Update on Cooper

A little more on Cooper's enlarged colon:
I spoke with his dietitian today about his GI issues and the x-ray results. Her suggestion was to continue with the Florajen capsules (1 is equal to 10 cups of yogurt :)) once a day to promote good bacteria growth AND increase his enzymes per feeding from 3 to 3.5 for a good week or two. Then, if he STILL doesn't seem to be doing well we'll look into taking him to a GI peds specialist at the UW. Then the plan might include an abdominal scan. She thought our concern of possible surgery to correct the issue may very well be a possibility to pursue in the future.

On a good note, kickball is only 24 days away! We are getting really excited and thrilled to see all the support coming our way. There are lots of new sponsors, a few new teams and hopefully lots of money to be raised. Last year we raised close to $10,000. Here's an updated list of all our sponsors so far:

Diamond Sponsors ($100)
Subway
Eric Felth, State Farm
Sullivan Vet
Sherman Sanitation
Sentry Vos
T & C Transfer
Petro Oil
Werner Pump Service
Knights of Columbus
Catholic Family Insurance
Catholic Knights
Dawg Daze Entertainment
Capn’s Steakhouse
Aropa
Slewfoot
The Drug Store
Pro Build
Ruffin’ It Resort
Adecco

T-shirt Sponsors ($75)
County City Credit Union, Jefferson

Base Sponsors ($25)
Creature Comforts
Maas Brothers Construction
Once and Again Consignments
Blackhawk Tavern and Grill
Crawfish Corners
Chemair Helicopters
Ultimate Excavating

If you haven't checked out the "official" Kickin' for a Cure website, take some time and do it today! www.kickin4acure.com

We are so blessed to have "techno-savy" neighbors Tim and Ann Marie to create and keep it up-to-date. Enjoy all their hard work!

The Big Question

So this past week, Cayden asked me two very important questions.
The first: "Mom, when I am old enough to drive can I go to a hotel without asking?"

And the second: "Why did God make me with CF?"
Tear.

We knew this day would come. And we were prepared. When Cayden was diagnosed I bought a book that I've been keeping just for this day. I had to locate it first. I lent it out to a friend.

"Grateful: A Song of Giving Thanks."

It goes like this:

I've got a roof over my head.
I've got a warm place to sleep.
Some nights I lie awake counting gifts
Instead of counting sheep.
I've got a heart that can hold love.
I've got a mind that can think.
There may be times when I lose the light
And let my spirits sink...
But I can't stay depressed
When I remember how I'm blessed!

Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful.

It's not that I don't want a lot,
Or hope for more or dream of more.
But giving thanks for what I've got
Makes me so much happier than keeping score.
In a world that can bring pain,
I will still take each chance...
For I believe that whatever the terrain
Our feet can learn to dance.
Whatever stone life may sling,
We can moan...
Or we can sing!

Keep Cooper in your prayers. He still is showing a spot on his lung x-ray from when he had pneumonia and an enlarged colon from malabsorption. Remembering all the while, that we are truly grateful.

Cooper's 1st Ride in a Swing

Milestones

When I asked Cayden what his favorite thing about visitng Dr. Green was he said "Playing with the chalk board!"

Cayden and Trinity had their 3 month appointments at the CF clinic yesterday. Here's how they did:




Trinity waiting patiently for her exam. They have to be naked for weights and for lung exams :)

Trinity got an inch taller (yeah!), but not any heavier (double ughgh!).
We talked with Dr. Green about her troubles with doing nebulizers each day. Such a battle during her terrible two's! We certainly didn't have this much resistance from Cayden as a toddler so we are in unchartered territory! It's a tough one and we are doing all the things we should be...
-doing therapy consistently and as much of a "regular" routine as possible
-doing therapy ALL together as a family event
-watching tv, working on puzzles, coloring, etc.

Many parents have their own philosophies about fighting with their kids to do treatments. Some refuse to force treatments on their kids. Chris and I have always weighed in on the side of doing it no matter what. The sooner they realize that this is not an optional part of their day the better. Right now is a huge building block for their future when mom and dad aren't with them to do treatment every day :). I truly believe you have to just keep plowing through the "rebellion" to show them how important it is for their health.

Other than Trinity's weight, Dr. Green was super happy with her health. No cough!


Cayden had a great appointment too! He gained a whopping 1.5 lbs in just 2 1/2 months! Yeah! He made it to a new milestone starting PFT's (pulmonary function tests) before each appointment. He didn't quite get the hang of it, but the good news is that he has the rest of his life to figure them out :)

He did awesome though for his first time. It's hard to understand taking little breaths, little breaths, and one BIG fast breath out. He did great blowing out hard. Just not fast enough and not long enough. He said the nose clip squeezed too hard!
The nose clip stops him from breathing through his nose.



Looking at the computer results. They didn't get a good reading since Cayden didn't quite exhale for 3 seconds. His last two tries were the best :)




It's a pretty big machine for a little guy!

Soaking Up Summer

Cooper loves to smile! And he loves to cry. More than any of the other kiddos did. We're hoping he'll grow out of this "colicky" stage quickly, but in the meantime he's keeping us busy. And I'm trying to enjoy him even when he screams at the top of his lungs when I set him down for even just a second to help get a meal on the table or fold a load of laundry.

We've been trying to soak up the last bits of summer and make the most of the days we have left! Next week Cayden and Colin are coming with our church group to Mt. Olympus for the day. Then, it's back to school shopping for the boys. Cayden will be starting kindergarten and Colin PreK3 2 days a week. Time is going by too fast. Slow down, time!

Our family has been really blessed by the church ladies and families at St. John's who continue to make us delicious meals twice a week. It's a huge blessing to not be spending my time in the kitchen right now! But I do miss trying new recipes. It's not a priority for me right now. I just recently heard this analogy of replacing the phrase "I don't have time..." with "It isn't a priority..." The next time you catch yourself saying to someone "I don't have time..." replace it. It's a great way to reevaluate what you're saying. Example-I don't have time to play with my kids. It isn't a priority to play with my kids. Ouch.

Cayden and Trinity have their next 3 month CF appointments on the 13th. Cayden starts PFTS...so excited to see how he does! Cooper goes in for a follow-up the week after.

And as much as I love the beauty of all summer has to offer I'm really looking forward to fall (thanks Anne!). My plants are all dying, the weeds are overgrowing. I feel like apologizing to visitors for my overgrown flower beds and lack of energy to do anything about it. Simply put, it's a priority right now to love our kids! Enjoy the beautiful weather!