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

Two Newborn Phrases I would like People to Stop Saying to Me

Two phrases I would like people to stop saying to me:

1. It will get easier.
2. Sleep when the baby sleeps.

1: Ryeson isn't necessarily a super fussy baby, but he's a baby who cries, and whines, many times for apparently no reason at all. And just when we have a way to get him to calm down on a somewhat consistent basis, he changes his mind. Getting up every 2 to 3 hours at night, and revolving a schedule around when he eats are both definitely difficult. I've heard the phrase "It will get easier" from many people while pregnant and over the last six weeks. Though, no one really has an answer to when it will get easier, just that it will someday.

The most honest advice was from my friend Veronica who said "it doesn't really get easier, you just get used to sleeping less." I found this phrase to be very true, considering I am not a complete zombie at 5 PM like I was in the first few weeks.

So, it is getting better, because I'm getting more used to the routine, and - to be quite honest – Ryeson is becoming more fun. he is starting to smile, be watchful, and make purposeful noises. He is more alert and it makes things more fun.

2: During the first few weeks that I was home, I was so afraid of everything. I had an extra tiny baby, that wanted to be held constantly. And I wasn't sure how to properly Holden without feeling like I was going to drop him in any minute.

He always wanted to be held, so when I would put him down (after he fell sleep in my arms) it was a crapshoot – sometimes he would sleep four hours, sometimes half hour, sometimes he would wake right up when I put him down and start crying. The problem is that each time I would put him down I wouldn't know which sleeping Ryeson I would get.... So attempting to take a nap while he sleeps was proving extremely difficult.

Going along with "it gets easier" I have learned to sometimes take cat naps while he is in my arms in bed, or laying right next me. I also learned that swaddling him and putting him in his rocker, sometimes tends to prolong his naps sometimes during the day.

* I had to add the word sometimes to both of these statements because it still is sporadic if I can fall asleep, or if he can stay sleep.

That being said – my husband and I are lucky (fingers crossed I'm not jinxing myself) that we have a very sleepy baby at night time. We actually have to set our alarm to feed him through the night, to get his weight up. And I'm up for an average of a half hour each time he wakes up.  Those two hour chunks of sleep are the best feelings in the world.

Ok, other than seeing Ryeson smile, or make a funny face right after I do.

  At least one of us is sleeping.


At least one of us is sleeping.

Pregnancy Cravings: Strawberries

Every since my second trimester, strawberries have tasted much sweeter than I remember. I am definitely obsessed (though, I am trying to diversify my fruit intake with watermelon, apples, peaches, etc. so I don't go through a carton of strawberries a day). 

One of my favorite dishes is a mix of sliced strawberries, sliced almonds, ground flaxseed over cottage cheese, overtop a gluten free waffle (with peanut butter), or over plain greek yogurt. All three versions are delicious!

Pregnancy Cravings: Strawberries

Peanut Butter and sliced strawberry waffles (so much healthier than jam). 

Pregnancy Cravings: Strawberries

Strawberries with pecans, sliced almonds, ground flaxseed and plain greek yogurt.

Pregnancy Cravings: Strawberries

Strawberries with sliced almonds, ground flaxseed over cottage cheese.