My Great Strides Story
Sarah Doney
Sarah Doney
Evelyn's Cystic Fibrosis story has been told SO many times but here it is again told by Shannon, the most amazing mom that ever was.
I was in labor for 8 days, each morning we would go to the hospital and they would agree I was having contractions 7 minutes apart but told me to go home until they were 5 minutes. On the 8th day we made it to the parking lot before my 7 min contractions resulted in a grumpy little toad making her appearance in the front seat of the Mazda. 
— with Sarah Doney.
— with Sarah Doney.Because she was born in the car a lot of the normal tests were forgotten/delayed and we did not get the CF indicator results from her infant screening until she was 3 months old. We were then instructed to get a sweat test to confirm CF.
In the mean time we had gone to visit some family and gotten very sick. My milk production went down because I was so ill and Evelyn stopped eating.
By her 4 month appointment she had lost 1 pound and her sweat test came back positive for CF. The doctor was so afraid to tell me the results she made me hear it from CF nurse over the phone. The CF nurse informed me to drop everything, grab my husband, and head to San Diego to their office.
For a second, I cried...but then I remembered both my children were in the next room with the doctor and I had to go pull Rob from work and tell him. So I sucked it up and got to work.
The next 6 months we were in and out of the hospital battling a "failure to thrive" label, driving a 100 mile round trip to get weekly weight checks, nasal feeding tubes, gastric feeding tube surgery, a bout of psuedomonas A caused by being intubated in surgery, and nebulized antibiotics for 30 days.
After the placement of her feeding tube she was able to get from negative percentile in weight up to an 85%! Which is great because studies indicate the healthier we can keep her weight the better chances her lungs have. She has also started a slew of medications and breathing treatments to manage her symptoms.
Now, Evelyn is a 11 year old rock star. She is brilliant, vibrant, active, outgoing, friendly, fearless, and has big dreams to conquer the world. She wants to be an architect, singer, and actress when she grows up. Evelyn is extremely energetic, very kind, and has an amazing imagination. She is a superhero.
We are incredibly fortunate, we do not have half the symptoms or issues that can come with CF. She has not been hospitalized since she was 9 months old (knock wood! 
). Evelyn is doing extremely well.
). Evelyn is doing extremely well.We spread awareness because (so far) we have been lucky, and not all people with CF are as lucky as we have been.
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