Cystic Fibrosis Awareness Month
So May is Cystic Fibrosis Awareness month. Our son was diagnosed when he was 1 month old last year on May 13. We had no idea what CF was.
For those that don’t know, this is how the Cystic Fibrosis Foundation describes CF:
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time…People with CF have inherited two copies of the defective CF gene — one copy from each parent. Both parents must have at least one copy of the defective gene.
Jenn and I are both carriers of the CF gene ∆F508. So Finn has the mutation double ∆f508. Right now he’s doing good. There are still lots of struggles with this disease. He has to do breathing treatments two times a day for the rest of his life or until there is a cure. He needs to take enzymes before he eats because he can’t get all the nutrients from his food. Here’s how the CFF explains this and a few other things:
People with cystic fibrosis are at greater risk of getting lung infections because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply. Lung infections, caused mostly by bacteria, are a serious and chronic problem for many people living with the disease. Minimizing contact with germs is a top concern for people with CF. The buildup of mucus in the pancreas can also stop the absorption of food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children.
Because of the thick sticky mucus we have to be super careful with germs. We now have to become “those parents”. You know, the kind that wipes everything down with Clorox wipes and bathes in sanitizer. We have to so that Finn will be healthy. Yes, we can get looks at restaurants or even comments from waitresses, “First time parent?” Yes, we actually had a waitress ask that and we said, “Yes, why do you ask?” She pointed out all the cleaning we were doing and we had to explain to her that our son had a rare disease and we had to do this even though we don’t want to. She apologized and all was well.
Every day can be a struggle, but with the right support system it can work. We have amazing friends and family that help us.
May is also when the CFF has their big fundraiser Great Strides. It’s a 5K walk to raise money. Georgia always does very well. Here’s our Great Strides page if you want to learn more or donate: Finn For The Win
I’ve always been super interested in the quantified self movement. The whole idea behind it is that you track certain things about yourself so that you can take that data and see possible ways to be better. Small versions of this is tracking your heart rate and steps. There are some people that take this to the extreme, but also are able to get a lot of excellent insights.
I’ve been using an app on and off over the past few years called Reporter. The app sends you six random “surveys” a day that asks you a bunch of questions and collects data. You write the questions based on what you want to know. So I have questions like, “Are you being productive right now?” And after that I have, “What circumstances are encouraging you to be productive?” and “What circumstances are hindering you from being productive?” After a certain period of time I can take this data and start to see if there are trends on when I’m being productive and what typically contributes or hinders me being productive. It also records your location and who you are with so you can see if there are certain locations where you typically are happier or certain people that make you happier.
I’ve just started this app back up again and I’ll report back when I have about a months worth of data. Before the app wouldn’t back up to iCloud and it does now. Super excited.
I’m going to start using Airmail as my new e-mail app. I really like the design and it has a ton of 3rd party integration too. I really like sending e-mails to my to-do app. It helps me remember the context of certain to-dos.
I’ll update after I’ve used the app for a while to see if it’s a worthy replacement for the stock app.