Tuesday, July 13

Breathing after the fire...

We snuck away to the delaware beaches for this past weekend. Many of the photos were taken there. Jack and I just needed some time away from the whirlwind of added treatments, extra coughs and meds. It was a great to get away to my parent's house and try to forget about the impending cough (or possible Monday trip to Hopkins if things didn't improve). In the comfort of family, I seemed to focus less on what was going wrong with Madeline...and through it all things quickly got better. Friday was a dry cough, Saturday was no cough, and Sunday was the satisfication of knowing that Saturday wasn't a fluke (no cough again). It was the perfect weekend to relax....
So,obviously the long story short is that Madeline got rid of her cough. I am not sure how or why..,but it just happened. Maybe someone thought that if "they" didn't give us a break from all the stress that we may all fall apart, maybe it was a "warning sign" of don't take things for granted, or maybe it was just fate. I don't know and I don't care. I don't care how she got it, where it came from, or what is was....all that matters is that the COUGH IS GONE!

I love, love, love our new cf care center (J. Hopkins). They are the most nurturing, personable people we have been been exposed to for Madeline's CF care. They put such a new spin on CF and make Jack and I feel better even when the $%#@*is getting ready to hit the fan. For that...I am beyond thankful. That is all CF families need in the worst of times for their CF children....a great group of caring doctors and nurses that make you feel like they can be trusted and genuinely care about your child. I have craved this feeling since Madeline was diagnosed. This reality only came true when we switched to Hopkins and it has been such a blessing for our family and our sanity. God bless you, Hopkins.

Madeline will continue her Bactrim for 2 weeks as noted by one of the nurses. We hope that it will be a smooth sailing few weeks and things will continue as they were before - steady.

These are the moments when you look back and are reminded that your child DOES indeed have CF and those damn inhaled treatments, enzymes, and extra calories you force upon her are not just a routine but simply apart of the life threatening disease that controls your daughter's life and fate. I hate that. But, I am so thankful for moments when we can bounce back, carry on, and remember how careful life is. Every day is precious. Every breath. Every healthy day is worth a million dollars. Don't ever take it for granted...


  1. Beautiful pictures!! Stay strong girl!

  2. She is beautiful.

    I know what you mean about how great it is to have a CF care team you can trust and rely on. Our CF care team here in Dallas is just wonderful. They feel like family to me.

    Oh yeah ... and a late welcome to the CF blogging world!


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