Thursday, January 6, 2011


Sometimes the spur in your butt comes unexpectedly from a complete stranger. This post has been sitting in a folder since last Sunday, just waiting for me to log in and post it. I admit, I've been a lazy blogger. But a note about the first post I ever wrote came from an anonymous source today and moved me to tears, and I remembered why I do this in the first place.

While I do hope to get back to blogging regularly now that the holiday insanity has abated, I hold no resolutions for the New Year. I love the 'clean slate' feeling of the blank calendar. I felt a huge sense of relief when the clock actually rolled over to 2011. 2010 was so full of promise, it began with Mike finishing Fire Academy and the impending birth of our son. By spring, jobs were scarce and we were reeling from the arrival of Cystic Fibrosis in our lives. Summer brought us a house, and the new school we had been trying to get Em into for two years. Fall brought about financial challenges, to say the least. We never quit. Maybe we cried, maybe we missed out on some things, or felt like we had, maybe we were weary, but we never quit. Maybe we even felt like we'd been whipped with the same switch so long it didn't even feel like pain anymore. But ultimately, Mike & I share the 'defiance of failure' quality. When things look black and the wolves are at the gate, don't look for the eyes in the dark, just tuck your head and keep going. It's a tactic that has treated us well, and as fall turned into winter, we began to reap the rewards of our 'never say die' philosophy.Trouble

Mike got a job with an EMS company that holds no end of promise, and we have been enjoying him not having to work 20 hours overtime just to pay his fuel bill to get to and from. Jackson has been amazing us since his discharge from the hospital in October. The addition of Pulmicort to his nebs twice a day has been just the boost his little lungs needed to get through the winter(so far, knock on wood). His wheeziness has decreased to the point of not being noticeable on a regular basis. His growth has slowed, and weight gain has become difficult. This can be pretty routine for a kid at his stage, as activity increases (he crawls, stands, and 'cruises' constantly now) caloric needs spike, and are harder to keep up with. I am trying to make sure he gets 1800 to 2000 calories a day, but considering that he doesn't eat more quantitatively than any other child his age, it is a challenge. Everything he eats is laced with coconut oil and heavy cream in an attempt to keep up with the Metabolic Monster. AT his last checkup, his Dr was concerned that he had gained only ounces since October (I was kind of shocked to learn this myself) We had a strategy session with his dietitian, who ultimately told me I was already doing everything right (which is great to hear, unless it's not working), and increased the concentration of his formula from 24 to 29 calories per ounce. My singular focus since this meeting has been to fatten him like Christmas Goose, or die trying. Dr made a mention of the large number of kids with CF who end up with a G Button sometime in their preschool years under the same circumstances. It can simply become impossible to funnel in as many calories as it takes to grow and thrive without stuffing a child silly. And giving a kiddo the fois gras treatment can have its own repercussions. A lot of children tire of being 'overfed', and pressured to eat, eat, eat, and begin to rebel against feeding time. This is also an intensely undesirable outcome that can cause physical and mental hardships into adulthood. I know my Dr, and while he made it a point to mention that this isn't something imminent or threatening to us now, he mentioned it so that should it become necessary, I won't be shocked to hear it. That was the part that saddened me. But as with all aspects of CF, it's time to do the very best we can to meet J's needs with intelligence and diligence, and if that's not enough, we will be grateful that modern medicine is there to help.NN3

In this case, diligence and intelligence mean that I am keeping a calorie journal of everything he eats between his last and his next weigh in. I am also working like a maniac to ensure that J gets a varied diet of fruits, vegetables and healthy proteins in addition to meeting his astronomical caloric needs. Our favorite and most effective allies in this battle have been Heavy Whipping Cream (50 cal per Tbsp) and Coconut Oil (120-130 cal per tbsp). I plan on writing a post dedicated to the wonders of Coconut oil this week, so stay tuned. There are endless reasons I prefer it to other sources of fat. To keep flavors and textures varied, I do occasionally use Olive oil (120 cal per tbsp) salted sweet cream butter (100 cal per tbsp) or other sources of fat. A typical meal For Jackson would be something like this:
2 oz of fruit/veggie, pureed to chunky texture (45 cal)
2 tbsp coconut oil (252 cal)
2 oz heavy whipping cream (200 cal)

Total approx 500 cal

Bottles go something like this:
8 oz @ 29 cal per oz = 232 cal
add 2 oz heavy cream = 200 cal
Total 432 calories (no predictors as to how much he will or won't take from a bottle these days)

It's work, folks. And sometimes it's challenging, and there's no guarantee it will do what we want it to, but really, that's life. If 2010 in a nutshell taught me anything, it's that myself, my children, and my family are amazingly resilient. We can cope with the curveballs. Having survived the last year and come out not only intact, but closer, stronger, and more apt to appreciate the absolute bounty of our lives makes me eager to see what 2011 and beyond has in store. (Vertex, this means you)

As for setting goals, I can't reserve it for once a year. I don't end up taking it seriously. In the last several months I've seen a few CFers that I follow given a new lease on life (yes, literally) via the beautiful gift of organ donation. I've seen others, still running on original equipment, begin training for a 5k. My mom took the bull by the horns and dropped half a person, and in turn, has a confidence about her I've NEVER seen. The perfect storm of inspiration began to brew inside and my resolution was made in November. By the time January 1st rolled around, I had gone from sedentary and breathless from a flight of stairs to running a 5k in 40 minutes. As a matter of fact, I made the 40 minute mark on January 1.(I'm not near done, I have 3 races scheduled before the end of March, but another time for that digression)

Don't wait for a circle on the calendar, folks. I could cliche you to death with all the 'time is passing us by', 'you only live once', but I'll spare you...mostly. But it doesn't hurt to pick a spot on the horizon and go for it.


  1. you are an awesome writer. Thanks for sharing your thoughts.

  2. I totally agree with not pressuring the food issue. We made food A HUGE concern and Nathan basically rejects everything at this point. Happy New Year!