Cystic Fibrosis and Social Media

A few weeks ago I shared a part of my life on Facebook that took me four months to be ready to share. I want to share it here as well, because I plan on focusing this blog to feature more information about our journey into health, food, salt air and exercise - for Ryeson, my husband and myself.

May is Cystic Fibrosis Awareness month, so I will continue to share more about our life with Rye. <3

Ryeson Bull

This has been a Facebook status I have written in my head a million times over, yet every time I go to type it I freeze up. Back in December, Jeff and I found out that Ryeson has a disease called Cystic Fibrosis (CF). A disorder that affects his lungs, pancreas and digestive system.

Very long story short, everything we do currently is preventative to help his lungs in the future. Each time he eats, he needs to take enzymes with applesauce to help him absorb the fat & vitamins in his milk (so he can grow). Every night we do breathing treatments – albuterol and a saline solution. Salt air is really good for his lungs, so you'll see us a lot at the ocean.

We have an amazing team of doctors at Kaiser and every month we see a specialty team in Oakland. I cannot begin to describe how wonderful they are.

We haven't been hiding his disease, I just wasn't sure I wanted to expose myself this much on social media.

As you probably guessed – we haven't let it stop us from living a full and happy life filled with awesome friends and delicious food, and libations. That was one of the questions we had for the doctors, is it OK to take Rye out in public. They said absolutely... Just stay away from sick people. Oh, and don't let the baby smoke cigarettes.

Rye is such a happy baby. Our 4.5 month old just rolled over for the first time last night and he is starting to creep (aka pre-crawl). We will definitely have our hands full with this one – but he is Jeff and my kid so we knew that was coming already.

There is a few events (5K, cycling) coming up in San Francisco, Santa Rosa (and across the country) in the next few months and I will be posting more information if anyone wants to participate and support him.

Sonoma Coast

We are not looking for sympathy, or articles about CF, or any advice. While we appreciate everything – every CF patient is different and we want to focus on what makes sense for Rye.

Thank you for taking the time reading this and getting to the end. We definitely appreciate all of the love for this adorable little baby. <3

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