Saturday, March 26


CF sometimes makes you  feel like you are running around in the dark and feeling your way through to make it to the destination. You think you know where you are heading but, there can be surprises along the way.

As a mother of a child with CF, I am always waiting for these "horrible" surprises. Just when you think that your child is doing well, some part of their CF takes a turn from the worse. It's like a slap in the face. These moments are so unpredictable. I find myself imagining the worse, and hoping for better. We all hate to think like this, but truth be told- it is the reality of this disease.

Madeline's clinic when better than expected- actually, a LOT better than expected.

Jack could hardly eat breakfast this morning. I know that he is usually one that holds up the fort when I am breaking  into a million pieces due to the ups and down of CF. But after I offered to make him breakfast this morning, he glanced up to say, "I am not even hungry...this clinic visit has got me more scared than usual." Yes, this is the guy that is usually calming my irrational thoughts, telling me everything is going to be okay, and saying"no, Madeline is not sick." So, of course I was a little lost for words when I discovered that he too...was worried. Where does that put my irrational feelings now? Could they be real?

All these horrible emotions came from the scale last night. It read: "your child has lost 1/2 a pound". Yes, we did the calculations. We weighed her on 3 different scales in the house. Bottom line- she had L-O-S-T weight. We knew earlier in the week that she had hardly gained half a pound in 5 days but then after weighing her last night...she had lost it all. How could that be???

We questioned ourselves, doubted the scales, and went to bed thinking that our math was wrong. It was hard to choke down that Madeline had LOST weight after two months of eating some of the highest fat foods. What did this mean?

We had already discussed what Madeline needed to at least have an "approval nod" from the staff at clinic.
As Madeline sat on the scale, the two of us froze for what felt like hours, staring as the scale worked to find her weight. The numbers flickered across the screen and somehow "magically" the number required for the "approval nod" arrived. It was just one of those times that CF surprises you- except in a good way (which is very seldom). Jack turned in that instant and we both grinned ear to ear. We had  won the jackpot. We beat the scale. Madeline had gained.

Watching a DVD with Daddy while waiting for the doctor

The numbers worked themselves out and Madeline made it to the 83rd percentile. After a throat culture, we were heading out the door with stickers and a lollipop. The only thing hanging over our head was Pseudo.


That ugly  beast.

We were told about a "plan" for Madeline. If she her culture came back with pseudo next week, then we would most likely treat it with a third round of inhaled TOBI and hope that it goes away after this round.

BUT.... if Madeline starts coughing we would most likely have to treat pseudo with 2 weeks of IV antibiotics.

So, there it is folks- a plan. I am not sure I like any of those plans. I am hopeful for a clear culture result and never having to deal with "a plan."

Keep your fingers crossed for us...


  1. We are following the same plan.. Inhaled Tobi unless she starts coughing. Our girls are strong tho, they'll kick Psuedos butt this time I'm sure :D

  2. I know IV's sound scary but they work and it's SO good to be aggressive. But I hope you won't even need to go there and that this culture will be clear! Keep us updated!

  3. I hated the IV's but I am glad we did it, Zoey is doing great and has managed not to get sick with all of the flu going around here right now. She will beat the nasty P word. She will kick butt and take names!!!!

  4. Thinking of you guys!! I love Madeline's adorable outfits! :)


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