A Story of Faith, Hope, and Miracles

Tuesday, November 15, 2011

Reaching the Finish Line

Here's a long lost picture from Colin's first day of school.


It seemed as if the anticipation couldn't be any thicker. On Friday we headed off to Madison for the "weigh-in" that we had been working ourselves up to. And so, we did what all good CF mamas do. We went to McDonald's.

No. Not after. BEFORE!

Trinity ate half of a mighty kids meal with 2 slices of bacon, a chocolate milkshake and fries. We did the usual mask ups in the elevators and headed up to the second floor. They called Trin's name and without looking back we headed for the check-in room.

As I waited for the scale digits to finish calculating it was nearly killing me on the inside. Did we do enough? Could we have possibly gotten her to gain something? Anything?

The numbers stopped. Kilos. The nurse presses the conversion button.

My heart nearly jumped out of my chest with sheer joy. Deep breath. She did it. We did. Trinity gained almost 2 lbs in 6 weeks. In my heart of hearts though, I know she only did that in the last 2 weeks on her appetite stimulant. We weren't out of the woods yet, but I felt like I had finally reached a place of comfort.

Our plan is to continue with the appetite stimulant, however people's bodies can become immune to them. Our dietitian suggested cycling the drug if that happens. In the meantime we will also change her Zantac to a stronger proton inhibitor which for CF patients maximizes their enzymes effectiveness.

For all my fellow CF mamas, here is a really great new site clinic shared with us on Friday for CF recipes called CFChef
One serving of the Banoffee Stuffed French Toast is 1100 calories!

We won't be back to clinic until after our trip to Disney which seems too close to be real!

Monday our doctor from clinic called to tell us our three checks for MRSA all came back clear! After 2 long years we can finally say we are MRSA free again. The infection control head told our doctor to personally thank us for adhering so well to the eradication protocol. Remember those chlorohexidine baths?!?

It's great to have such wonderful things to take us through the cold season :).


This picture of Cooper says it all!

Monday, November 7, 2011

Pray for Rain

It's just a figurative expression, but seriously we need prayers! This Friday is Trinity's big weight in and the moment of truth for how the appetite stim. is affecting her eating habits.

Our helping hands site is up and running. We've had a few takers and are really enjoying seeing how it works. Thanks to those who have stepped up and taken a "turn"!

I will post more on Friday or Saturday but we are very hopeful that she can pull of a 2 lb weight gain.

We'll keep you posted...

Here is a post-Halloween shot of the kiddos in costume. We are loving fall and the beautiful weather :)