He Weighs What?!?

That was exactly my reaction as I did a double blink at the numbers on the scales staring back at me.

Cooper weighs 20 lbs 7 oz. Finally all the hard work paid off!

We are so thrilled to have him above the 50th percentile for the first time!

And, he's no short cookie either. At 30 inches Cooper is also in the 75th percentile for height.

At nine months old my baby is growing up fast! Major accomplishment of this month has been mastering sitting up all by himself. He's on all fours and getting ready for crawling...look out!

I love this kid...

So serious.


Whoa! A little too close.


Finally a big grin.


Both dimples showing.

Chosen Mothers

Mothers of children, even if they have a thousand, carry each and every one fixed on their hearts, and because of the strength of their love they do not forget any of them. In fact, it seems that the more children they have the more their love and care for each one is increased. St. Angela Merici (Patron Saint of Disabled Persons)

Praying for all the "Chosen Mothers" in my life:
Liz (10 year old son Connor with inoperable brain cancer)


Mary (6 year old son Treyton lost to a drunk-driver)


Catherine (adoptive mother of 4, also battling cancer).


And the still countless others I have met who care for children with cystic fibrosis.

It helps to make sense out of the senseless.
To find hope in the despair.
That I am a Chosen Mother.

I see the King of Glory coming on the clouds with fire.

The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?


Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."


"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."


"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

The "P" Word

This blog is all about the "P" word. Yes, poop.
Confession: I never thought I would have to call the doctor to ask for a laxative---for one of my CF kids!

The "P" word is a pretty common topic of interest in any CF family's vocabulary. This is what CF is all about!

It's true. Trinity has been constipated and having trouble passing the hard stools. I assumed it happens for the same reason they have greasy loose stools and malabsorption. Occasionally the gut becomes completely blocked, resulting in extreme stomach pain.

It's definitely a really good thing to have formed stools. It's just something you never expect in our house! But she's been complaining more and more lately that she's in pain which makes potty-training (which she has NO interest in what-so-ever) even more difficult. The doctor called in a prescription for mirolax to see if we have any improvement.

Continue On

No news to share. No challenges to post. Everyone is basking in baseline weather at our house. Next clinic visit for all three is on February 18th! Colin turns 4 on Thursday! So very hard to believe. He had a weekend all to himself with mom and dad. It is strange to think how different his life would be without his three siblings.

Sitting on my dresser I keep this saying near by. So when the mundane sets in, I will see it and remember to continue on.

Continue On

Written by I. Brown

A woman once fretted over the usefulness of her life. She feared she was wasting her potential being a devoted wife and mother. She wondered if the time and energy she invested in her husband and children would make a difference. At times she got discouraged because so much of what she did seemed to go unnoticed and unappreciated. "Is it worth it?" she often wondered. "Is there something better that I could be doing with my time?"

It was during these moments of questioning that she heard the still, small voice of her heavenly Father speak to her heart:

"You are a wife and mother because that is what I have called you to be. Much of what you do is hidden from the public eye. But I notice. Most of what you give is done without remuneration. But I am your reward. Your husband cannot be the man I have called him to be without your support. Your influence upon him is greater than you think and more powerful than you will ever know. I bless him through your service and honor him through your love. Your children are precious to Me--even more precious than they are to you. I have entrusted them to your care to raise for Me.

"What you invest in them is an offering to Me.

"You may never be in the public spotlight. But your obedience shines as a bright light before Me.

"Continue on."

Show your Support!

If you have been voting for the CF's Pepsi Refresh grant idea thank you! Continue to vote daily through January 31st by CLICK HERE TO VOTE FOR CF Each month Pepsi Refresh Grant Awards 2 $250,000 grants for the 2 ideas with the most votes.

I am asking the CF community to please also show your support for another cause that is very near and dear to our hearts.

Treyton's family (our school principal's 6 year old son who's life was taken by a drunk driver this past Sept) has a wonderful opportunity to be awarded the $250,000 grant money for the building of a baseball diamond in his honor! CLICK HERE TO VOTE FOR TREYTON'S FIELD OF DREAMS



You can vote 3 ways each day:
Facebook
Email
and Text

CysticLife Rocks My Face Off!

I love CysticLife (the social network for cystic fibrosis).

Check out these fab resources and reading materials if CF is new to your vocab or you're a veteran!!

Information Flyer

This is my favorite: Booklet for Newly Diagnosed
I think it should be available at all CF care centers.

A Snack Guide for adding Calories (I might use this for my own dieting purposes!)

Go check out CysticLife today!

Christ Bless This Home

Happy New Year!

20+C+M+B+11
On the evening before Three Kings, traditionally there
were prayers, blessed dried herbs would be burnt and
their aromatic smell would fill the house. Doorways
would be sprinkled with holy water and the master of
the house would write with chalk C + M + B and the
year above the house and barn door and say: "Caspar,
Melchior, Balthasar, behütet uns auch für dieses Jahr,
vor Feuer und vor Wassergefahr." ("CMB, protect us
again this year from the dangers of fire and water.") C +
M + B has traditionally been translated with Caspar,
Melchior and Balthasar, however, according to the
Church it stands for "Christus Mansionem
Benedictat" (Christ bless this home).

We have been keeping busy with spending time with our families for Christmas, ringing in the New Year, baking new treats and dishes, and staying healthy.

Here's an extremely cute story to share: This past week our nieces and nephews came over for a movie night and play time with the kids. My 4 year old niece asked me "Aunt Tiffany, why is Colin the only one in your family that doesn't have to do therapy." It's amazing what details they notice.

ALL THE KIDS ARE BACK TO BASELINE with a minor exception of Cayden who is extremely close. A great way to start 2011.

Some bad news to start the new year: a Phase-3 study drug Denufusol did not show promising results. Read the CF Foundation's press release here.

It's a pretty big deal. Just two weeks ago at Cooper's appointment Dr. Green was talking about the possibility that if all went "as planned" for this drug it could be available in 2011 and could be an option for treatment. But there's still hope for the more than 30 other drugs in the pipeline. And that's why I'm so grateful to have the CF Foundation doing all the wonderful work they are in bringing new and innovative therapies to the pipeline constantly in the instance that one, like Denufusol doesn't pan out.

Cayden, Trinity and Cooper all return for check-ups in about 3 weeks. And we will FINALLY turn in Trinity's hyper tonic saline study after 48 grueling weeks. We'll have to celebrate that day for sure.

I know it's a tradition to look back at the close of the past year and reflect, but this year has been undoubtedly a roller coaster of ups and downs, twists and turns. So much that I feel like I haven't even gotten settled in the seat. I hate roller coasters. But I will say what amazing growth has taken place for me in just the past 8 months. 8 months ago I had no idea where the journey would lead our family.


This picture was taken a day before my entire world would change. Forever.

Dozens of medications, hospital stays, clinic appointments, hours of chest therapy and nebulizer treatments awaited me. I would have to leave my baby in the hospital while I returned home.



Not anything unknown. But certainly nothing I thought I was capable of. But here we are today. Cooper has certainly blessed our family.


And doesn't he make an adorable Bucky?

The Wise Men read the books, learned where to find Christ, and traveled for days to meet him. For us, he's a short drive away, in the tabernacle.

The Wise Men gave their best to God. Do we give our best time, best efforts, best talents? Or what we don't want anyway?

Much love-Tiffany