Sunday, February 19, 2017

You Might Be A CF Family If......


I really enjoyed Letterman's top ten lists and miss them. My husband sneaked a radio to listen to sports at night when he was a kid and I sneaked into the living room to watch David Letterman's top 10 list. Sometimes I didn't even have to sneak, I'd just sit next to my Dad and watch. So I've been mulling over this list below for a while. This list is more of an inside joke for other CF families in the world but I got a kick out of writing it. I kept changing it, probably could have made it a top 20 list, but here's my try on a little Letterman top ten list.

Top 10 Signs You Might Be A Cystic Fibrosis Family

You Might Be A CF Family If:

10. You get excited when Miralax goes on sale.

9. Your kid is best friends with the school nurse.

8. You require two gallons of half and half per week.

7. You know what it means to “flush the line.”

6. You carry applesauce with you wherever you go.

5. Your collection and variety of sizes of syringes makes you proud.

4. You’ve mastered the art of getting a baby to swallow the contents of 4 pills in the dark, in a movie theatre, at the zoo, mini golfing, camping, and many other strange and exotic places.

3. You have several creative uses for IV split gauze, or even know what IV split gauze is. 

2. Your kids aren’t allowed to flush the toilet until you inspect their poop.

1. You know what a “virtual line” is at Disneyland, and you dream of it at the grocery store.


Now to the business of the rest of this weeks blog post. I wanted to highlight some of my favorite pictures from this week.

First off we have baby Ruby, who is talking and interacting so much lately that we probably shouldn't call her baby Ruby anymore but we won't stop and you can't make us. She was indulged in some necklaces this week and we had to tackle her to get them off for bed time.
 Secondly we had a clinic visit this week, always quite the adventure. Also happened to be the day I figured out how to use the "My Story" on Instagram which I have had fun with. I snapped this picture during Orson's PFT test. He isn't quite old enough for them to get a reliable number but they have wanted him to practice for the past year. Here he is huffing his heart out into this computer to test his pulmonary function. His big sister Maelee is in the background intensely cheering him on. She has just finished with her test and knows the seriousness of the PFT test. After all Maelee knows her PFT's are what landed her in the hospital and what got her out. Its serious business. I love the look of intensity that they both have in this picture. Its a perfect summation of the feelings these CF people feel as they are measured and weighed in so many areas constantly.
 This was a sweet picture taken on clinic day as well. Some sort of special connection happens to siblings who get stomach x-rays together.....and I don't just mean the shared radiation exposure (sorry that may have been an inappropriate joke). Really though a strange and wonderful blessing of having more than one kid with the same chronic disease is that they have the opportunity to see the journey from many points of view. I love to see them cheering for each other knowing very well what the other one is going through.
That's all folks I hope that you enjoyed some sweet pics from this week. Stay tuned for upcoming blog posts about the two weeks I created an inordinate amount of work for myself and my husband by picking the wrong word, and how we try to keep our one non-CF child as connected with these three who share 4 hour doctors appointments and hours and hours of treatments together.



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