Weekends are better...

"Feeling are much like waves, we can't keep them from coming but we can choose which ones to surf."

For some reason since Jack has been diagnosed with CF, I feel like weekends are "emotionally easier."

Jack spent this past weekend with his Daddy, I always miss him but this weekend it was a lot different. For the past few months Jack and I have spent countless hours together trying to figure all this out. The waiting at Doctor Offices, Hospitals or even just driving, has given Jack and I some amazing bonding time (not that we were lackin :) anyway, I think I've just gotten comfortable with him literally hanging on me! As a Mom, even when you trust the Man you are sharing your child with, it is hard to let go. Rather it be for a few hours or for the weekend, it's still hard. I will admit sometimes I get to the point where I say "I NEED A BREAK" but a few short minutes after they walk out the door I begin to miss them! This weekend was sooooo relaxing and nice, thanks to some much needed one on one time with my Husband whom I ADORE! By Sunday morning we had Jaden and Jensen home with us and the count-down was on for Jack to come home. I swear what was an hour seemed more like 10 hours. I kept myself busy doing the very thing my Mom used to tell me "NEVER DO" *I was wishing time away* Then all of a sudden it was 8pm and my beautiful baby walked thru the door, hugged me and said "I missed you Mama" that was it. My home was now complete, my Husband and Children all home, safe and happy. The only sad part, it was all just in time for the weekend to end. The good part... we were together!

The reason I feel weekends are less emotional, there are NO clinics, NO test results, NO office visits etc. It almost feels like all of this is a dream. And then... in the middle of NO WHERE, Monday comes and dangles "worry," "confusion" and "sadness" from a string, right in front of your face.

We are looking forward to NEXT weekend but in the meantime, we are patiently waiting for more test results. We are looking forward to answers and a treatment plan.

Thank you, Thank you, Thank you... each and everyone of you that have: thought about us, cared about us, checked on us, prayed for us, cooked for us, babysat for us, spoiled us and loved us! We knew we had great people in our lives but we never imagined how many. For those of you I have not responded to nor answered your calls, please don't be offended. I appreciate EVERYTHING!

"The smallest act of kindness is worth more than the grandest intention."

Until next time...LOVES to all,
The Mama

HOW DO I GET OFF THIS RIDE?!

The Diagnosis ~
Up and down, around and around, out of control and going wayyy too fast! That's how some parents describe how they felt when swirling around in the medical maelstrom that follows a child's diagnosis of Cystic Fibrosis. *EXACTLY HOW I FEEL*

Some simple things that can make a BIG difference ~
* Positive support from Family & Friends
* Support from CF communities
* Focus on Faith
* Blog
* Read inspiring books
* Take time to do fun things

Understanding Guilt ~
* It is my fault that my child got sick
* I must make sure my child is happy all the time
* It is my job to make my other children healthy
* It is selfish or wrong to take time for myself
* The family is a mess and it's my fault
* I need to try harder

Avoiding Bumps in the Road ~
Parenting isn't for the faint-hearted! Raising throughout their developmental stages is tricky enough; parents of kids with CF have to face additional challenges along the way.
When we know where the bumps and potholes are, it becomes a lot easier to avoid them!

The Good News ~
Just like a roller coaster, the "newly diagnosed" ride eventually slows down and stops. Even in the toughest of circumstances, life has a way of becoming routine. You will find a new "normal." and you'll be able to look back and say, "As scary as that experience was, I survived!"

January 24th UPDATE

Today our Doctor is back in town!!! Yippee, Welcome home, we missed you and need you!

At 4:30 today we had our appointment with Dr. B. Jaden, Jack and I loaded up and off we went!

I figured that he would request to re-do the sweat test or possibly say "nothing to worry about." However, he had figured on telling us a totally different thing.
He began to tell me a little about CF and then confirmed that Jack has it. He asked the Med Student working with him to take my boys out of the room so we could talk in private. He told me the good, the bad and the ugly.

Then he asked if I wanted him to talk to anyone else or even have him assist us in telling the boys. (Something we chose to do because they were concerned when they saw me crying). Ben and Kenzie (Jack's Dad) came right away and we had the opportunity to ask alot of questions. I have no idea what is next but I'll keep ya posted!

Loves to all,
The MoM

January 21st UPDATE

The sweat chloride test went ok! I couldn't tell if Jack was really un-comfortable or if he was just sick of tests, either way he HATED IT but remained strong!

After the test they informed us that we would have results that evening. Because our Pediatrician was out of town in Africa (I know, perfect timing huh?) I was given the results by another Doctor in his office. She stated that he tested high for CF but not to stress because she doesn't know much about it and if she remembered correctly the numbers were ONLY "high borderline." AND... that was the wonderful helpless information I was given at 4:45 on Friday Jan. 21st 2011.

FOR NOW, Loves to all,
The MoM

January 20th UPDATE

Jack had his Upper GI Series with Barium yesterday. Lucky for us we had an AMAZING Nurse and a very KNOWLEDGEABLE Doc! Jack was a trooper and drank the Barium as if it were soda!
The test took about 20 minutes and we were done! The best part of today's test, we had results immediately. NOTHING was found--no swallowing difficulties, gastro-esophageal reflux, ulcers, abnormal growths, scars, narrowing of the GI tract, hiatal hernia, or diverticulitis. It also gave us reassurance that his bowels are not backed up. In other words, MORE ELIMINATION!!!
Tomorrow morning bright and early, we go back to Primary's for a Sweat Chloride Test to ELIMINATE Cystic Fibrosis.

Love to you all,
The MoM

The Beginning...

As many of you know we have been concerned about Jack's weight for awhile now.

Long story short... When Jack was born he weighed 8lbs 1oz, when he came home 2 days later he was 7lbs even. Jack's weight has been an issue from the beginning, but when he was 2 months and 3 weeks he was finally back at his birth weight.

The first time I recall an issue (which I thought WAS NOT the flu) was December 29th, 2005. Jack puked so many times that he became dehydrated. "It's a normal flu bug" is what the Doctors would tell us.

Over time Jack seemed to get the flu constantly however, he never had a fever or any other symptoms of flu. The biggest NON symptom... Nobody around him ever got sick.

By the time jack was four he was in the 90th percentile for weight and 95th for height! What a turnaround for our little Jackl! His cheeks filled in and he started to look chubby.

In the last year Jack's puking episodes and stomach aches have become more frequent, averaging about 6 weeks in between. He has been losing weight and in the last 6 months he went from the 25th percentile to the 3rd percentile and lost 1 pound without gaining an ounce.

We have a new Pediatrician who seems to be on top of things, He's run lots of tests for process of elimination. Side Note: Jack feels like a pin cushion or in his case a pin bone, since he has no cushion.

On January 19th we spent the morning at Primary Children's GI clinic. We were lucky enough to see both the Nurse Practitioner Deborah Lenner and the Doctor, Mary O' Gorman. They did a thorough exam of our little Jack and discovered that his lymph nodes are abnormally large. So, on top of the other stuff that's going on now the concern has shifted and, off to the lab for more blood work. After another session of process of elimination they may request to remove them however, the labs will take 2 weeks to get all of them back. Some will results will trickle in daily and the GI Clinic keep us informed at all times.

On January 20th we went for an Upper GI Series to see Jack's little insides.

As for now, these are the only updates I have. We are praying for Jack's health, for answers and for God to settle our minds and comfort us during this time.

Thanks for the concern you have shown us!

Love,
The MoM