About Us........

My Name is Melissa and I have been married to jim for almost 10 yrs.....

We have a son dylan who is 1o and does NOT have cystic fibrosis.......

Our Middle son Caleb was diagnosed with Cystic fibrosis at 7 months old....... 7 yrs ago today....

I remember our wonderful ped. saying she just wanted to rule it out, after caleb had been sick off and on for several months................

I also remember my mom telling me that there was no way he had cf..... and when kids did have it they had to be pounded on several times a day.................

I remember the day caleb had his sweat test the person that did it said out of all the tests she had done no one had ever tested positive................

I remember the day caleb had his sweat test we had just gotten home (only 40 mins after the first test) I was called to come back in for another sweat test................

I knew in MY HEART SOMETHING WAS WRONG!!!

I brought caleb back in and they re-assured me that I was only there due to their error!

Another hr passed and the Ped's office called me and wanted me to come in ASAP to talk about the test results.....................

I demanded to hear the results over the phone!! I knew something was wrong and didnt want to drive an hr worrying......

After a few mins of hesitation they told me that calebs sweat test came back POSITIVE for Cystic fibroisis..........

It had been a long time since I saw my mom and gram cry.......................

Expecially MY mom!

We were told a few facts and pretty much sent on our way.....................

Later that evening I got a call from calebs ped (who was on vacation)

She was stunned with the results.........

She just couldnt believe it.................

No one could..................

Caleb was started on meds which he just wouldnt take................. NO matter what!!!!!!!!

A few weeks later he still wasnt getting better and he was rolling his eyes.............

It was found that he had a very low sodium level and was immediately transported to barbara bush childrens hospital.....................

He spent a week there getting his levels back to normal................... and for me it was learning more about his diagnosis.............

It took him a few yrs to get past the gag reflux in order for him to take his enzymes!

For him it came down to swallowing a piece of Hubba Bubba bubble gum!!!

So far he has only been in the hospital that one time.............

He is now 7 1/2 and on the following...........

2 creon 20.....

2 puffs of flovent twice daily

albuterol twice daily

azithromicin M/W/F

Cefzil twice daily

Pulmozyme once daily

ADEK vitamins...

culturelle

Chest PT twice daily

prevacid once a day

2-3 pediasure daily

High calorie diet.........................................


Until next time...............

Melissa