Confessions of a Youth Minister and CF Mom : Pray for Rain

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 :)

1 comment:

SandyNovember 8, 2011 at 7:45 PM
Thinking of you and Trinity this Friday...hope it goes well! Love the pic of the kiddos. I am sending those good vibes your way... :)
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Current Meds

Cayden

RespiTech Vest
(airway clearance)

Azithromycin

Ursodiol

Pancreatic Enzymes-Creon 12,000
(4 with meals, 2-3 with snacks)

Pulmozyme 1x daily
(nebulizer)

Source CF chewable vitamin
(bubble gum or grape flavored)

Vitamin D

Ensure Plus (2-3 a day)

Trinity

Zantac

Vitamax liquid vitamin

Pancreatic Enzymes-Creon 12,000
(3 with meals and snacks)

Pulmozyme 1x daily
(nebulizer)

Hypertonic Saline 2x daily
(nebulizer)

Vitamin D

Pediasure Supplement Shakes (2-3 a day)

Cooper
Manual chest therapy
(airway clearance)

Vitamax liquid vitamin

Omeprozal

Pancreatic Enzymes-Creon 6000
(4 with meals and snacks)

Vitamin D

***It's also quite normal that all three would be on some form of antibiotic for 10-14 days.

This is my husband Chris. We met nearly a decade ago at a church retreat. I knew I was going to marry him the day I met him (no joke). We immediately fell in love and found that we had nearly everything in common. We started a list of those things and to do this day I still have the list. Ironically, we also both have genetic mutations for cystic fibrosis. When we were married for just 6 short months we went through a house fire. He rebuilt our lives (and a new home) literally from the ground up in just 6 short months. He is my best friend, a wonderful father, and he gets me through the tough days with his wittiness and sense of humor.

Colin "CW" short for "Colin William" was born in Jan of 2007. Weighing in at 10 lbs even he tipped the scales (and our hearts). 7 days later we received negative results on a sweat test. After praying much to John Paul the Great, we claim Colin to be a miracle of JPII's intercession. Colin is shy and a follower. He religiously carries 3 silky blankets affectionately called his "blue b's" with him everyone he goes (think Linus from Charlie Brown). He says "my" instead of "I" in all of his sentences. He adores being a little brother.