the days of being sad about this CF thing are starting to accumulate…


looking back, the summer was spent as a waiting game, filled with uncertainty. it weighed on our minds, but thankfully, it didn’t impair our day to day activities. 


i was still scared. 


with c putting in lots of hours at work, he escapes his thoughts and worries. (not saying that is better)


me?


i am pretty much with her every day. 

looking at her. 

wondering where i went wrong. 

what did i do wrong? 

i swear i only had a little bit of caffeine and it was in the second trimester. 

i followed most of the rules, i promise! 

…ok, i did eat some cookie batter and enjoyed the tiniest sip of wine here and there.


it was torture. (and that all ^^^has nothing to do with genetics)



sometime in june, we had a second sweat test on baby girl, where she was more aware and pretty much cried the whole time.


the chloride numbers were the same as the first sweat test. 


nothing was definitive.  


frustration abound.


each time we had a test done, whether it was a fecal elastase, throat culture or sweat, we were right back in the pulmonologist’s office discussing the results.
since we had two sweat tests with inconclusive results, the next step was the genetic blood test.

if i thought the sweat tests were hard, having blood work done on a 3 month old was the winner. 

sweet baby girl screamed and cried all the while looking right into my eyes as i was holding her. 

it was absolutely heartbreaking. 

i just kept singing and smiling at her through my own tears, reassuring her it was all ok. 



now, i know, it could be so much worse. 

i know it could be cancer. 

or major surgeries.

or… 


know


and that’s where i am grateful


it’s going to be okay.

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