Monday, June 27, 2016


Those who follow me on Instagram know that we've been monitoring Hawke for signs of Cystic Fibrosis. CF is a genetic disease and we know he is a carrier simply from my DNA. You have to carry two CF genes to have the disease. We do not know if my husband is a carrier or not, therefore we don't know Hawkes chances of having it.

We've been doing some testing for months now ("sweat tests") & the other day we had an appointment for him to be evaluated at the Phoenix Children's Center CF Clinic.

What is a "sweat test"? They stimulate the sweat glands in your arms to sweat and collect samples. With CF the sodium-chloride channels are defective. This causes us to secrete a lot of, and crave salt. The samples are then run to test the salt content in them. If their is an abnormally high salt content collected, the chances of having CF are significant. If they are low/normal ranges, then the chances of CF are low.

Previously two sweat tests have been performed on Hawke and one came back high/"borderline CF" & the other low/"normal".

At clinic today he was evaluated by the main CF doctor and Pulmonologist. It was determined that Hawke will do a third sweat test to see which of the previous ones are the anomaly since they were on complete ends of the spectrum. A stool sample was sent off - to look for pancreatic insufficiency, and a sputum culture was taken - to see if he is growing any bacteria in his lungs that CFer's can. Once we receive all these results, it will help us see a clearer picture.

We are grateful that at this time Hawke doesn't have any alarming or blaring symptoms, which keeps us hopeful. 

It was a crazy experience taking my son to a CF appt. Not only because the chances of him having CF are low, but because the thought of ever having my own child was even lower. It was a proud experience for me as a CFer to be walking in with my own child in my arms.

H is not super happy to wear this new mask

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