Saturday, January 29, 2011

Digging In

It looks like 24 hours was the limit on sad and mopey this go round. A little venting, a few tears, and just a pinch of cursing the universe, and I was ready to take the proverbial bull by the horns.2011-01-28 17.54.30

I'm taking a two pronged approach to the situation, the first of which was a major grocery shopping spree. At the advice of the dietitian, we are experimenting with more solid foods. High fat solid foods. So I went on a mission for natural (low/no preservatives, meat raised without antibiotics, pesticide free produce) treats that could be made high calorie and high fat. After two days, I have a freezer full of mini tacos, mini cheeseburgers, sweet potato fries, regular fries, mozzarella sticks, mini chicken sandwiches, and nuggets of mac-n-cheese. I also bought a deep fryer, perhaps the most counter intuitive purchase of my life. I've discovered you really can batter and fry anything, from green beans and apples to girl scout cookies. A little egg wash, a little wheat flour, and toss it in the oil. I'm not feeding J an exclusively fried diet, but I am doing a lot of experimenting with what can be done with this marvelous machine. I also re-stocked on Olive oil mayonnaise for dipping. So far, cheeseburgers and chicken fingers are the clear winners, and seeing J's enthusiasm for new foods after his recent rejections of almost everything is encouraging.

Prong two is research. Reading about the what, when, and how of G tube placement, care, and use helped a lot. Selectively talking to other parents who have been where we are is also a tremendous help. I say selectively because I don't and won't talk to just anyone about these things. There is a lot of hyper- negativity and hyper-positivity based on one's own experience that can hinder real information gathering and/or influence my experience before I've even had it. But advice and reflection from people I know and trust is invaluable. Mike and I sat and watched tons of you tube videos tonight too. Laprocsopic placement of the tube, placement, changing, care, and cleaning of the button, and the start to finish procedure of administering bolus feedings are no longer a mystery. I am someone who needs to be armed with information!

Tonight I feel good. Okay, I at least feel better. I have prepared us and Jacks in every way I can at this moment. We are actively following all protocols to try to avoid needing tube feedings. But in the end if the struggle is too great, I know what to expect and feel prepared to face it. I will also know at that point that we did everything we could and that the time is right to ease Jackson's struggle to grow by medical intervention. I read in a friends blog yesterday, "YES, things SHOULD be different. But they're not, and until and unless things change, you have to learn to function and succeed within the reality that is, rather than the ideal that should be." And it was EXACTLY what I needed to hear, and I plan to do just that.

(If anyone would like to see the videos, shoot me a message. They are very informational but I hesitate to post them due to the graphic medical nature of some parts. It should be something one chooses to see rather than a visual assault upon entry.)

Thursday, January 27, 2011

Frustration and Darkness

The darkness refers to my mood.

As hard as I work to contribute positive energy and work in the world of CF, I, like all of us, have dark days.

It's not that we got terrible news. In the grand scheme of things, Jacks is still doing fantastically well. Well, except for the fact that my growing child hasn't gained an ounce in almost 4 months now. Since his hospital discharge, J has held steady at the 20 lb mark. He's dropped from the 90th percentile to skimming below the 25th. And while I struggle to maintain a winning outlook in spite of his slide down the growth chart, I might just slap the next person who says "with those cheeks/arms/legs? No way he's struggling to gain weight." Put this on your list of things to never say to a parent of a CF kiddo. I know it's well intended, but it falls under the "But you look so healthy" category. I could have kicked myself when I scrambled for the unit conversion app on my phone and discovered that in spite of everything- the massive calorie counts, the midnight feedings, the charting, the frying, the whipped cream- my smiling little boy sat on the scale weighing EXACTLY what he did a month ago when "the weight" became "the issue". I could have SWORN he was packing on pounds. I could have sworn his face was fuller, his thighs more robust.

It's not TERRIBLE. But it's disappointing as all hell, and it brings up all the nasty, mucky, dirty feelings that I most often don't have to face, like the crap at the bottom of the fish tank that swirls up when you add water. Fear. Anger. And Mortality. You can argue with me all you want that mortality isn't a feeling, but you'd be wrong. Driving home today I caught a particularly stunning view of the late afternoon sun, framed by artfully brushed clouds and towering oak branches. Most days I would have only been struck by the moment of extreme aesthetic pleasure. Em and I talked about how very beautiful it was, but in my head I only thought, "it means nothing". Not my usual MO.

We have another month to reverse this trend. Meds have been tweaked for probable reflux issues, eating plans altered, and I kid you not, a deep fryer has been placed on my kitchen counter. NO, the situation is not yet desperate but it is on a steady decline, and today we were told that if it continues after yet another intense effort to gain, it will be time to discuss 'other options'. Feeding tubes are not the end of the world, and if they help Jackson grow and be healthy, then we will embrace it.

But all things being equal, today is a black day. I'm pissed. I can't shake the angry feeling of having done everything in my power and it not having mattered or been enough. I feel like swearing at everyone I meet. I don't feel kind or altruistic or helpful or any of the things I want to be. Nope, today I want to kick the dirt and exclaim "it's not fair".

I'll get back up. I'll feel like fighting again tomorrow, and teaching Jacks to fight- for someday this battle will be his alone. And I'll remember that my path is to aid in easing that battle.

Wednesday, January 19, 2011

A Call to Arms

This is me, just about a year ago, about to become a CF Mama.

I have been working on this post for a couple of weeks, believe it or not. It's been weighing heavily on me. I have recently had two encounters that left me wondering how much of our lives and my personal journey I really wanted to share on line. I dove into a pit of self awareness and defensiveness, because my stock reaction is to believe that if I explain myself clearly enough, everyone will understand me. (Ha!) And somehow, after all these years, I'm still surprised that that is not always the case.

I asked for advice and experience. Would you quiet certain aspects of your personality in order to reach a wider audience if the message were important enough to you? What I have to say about CF and Organ Donation is THAT important. Helping ONE person is important enough to me that I would cover my tattoos and put on a sweater set in a hot second if it made the difference. This isn't about "I want you to like me", this is about "I need you to hear me".

I was surprised when the feedback I got ALL said "Be yourself. Let your personality show." And it really came into focus for me this week. Authenticity speaks louder than words.

Two things really made it click. One, I got the call from our Social Worker that we had been not only nominated, but now accepted as the newest members of Cook Children's Cystic Fibrosis Family Advisory Council. I had been waiting for this call for weeks. It means someone at our clinic thinks we have valuable input and can help improve communication, education, and practices between the clinic and our CF families. They nominated us. I filled out the application, sent it back, and now the board agrees. I have something to offer. Genuine, authentic me is of help in the fight against CF. I will sit in this group and come up with ideas to help educate and communicate with the CF families at our clinic and I will make a REAL difference in someone's experience.

I also had the pleasure of being added to a Facebook group for CF Mamas (& Poppas,too!) this week, which I watched balloon up to (at the time I'm writing this) to 230+ members in about 24 hours, and it is still growing. At first I was hesitant to post. I was a little judgmental. I immediately marked myself as an outsider and decided I probably wouldn't participate very much. But I started reading posts from everywhere. All of these women & men who feel like I do. Scared. Determined. Tireless.

Before I knew it we were talking about recipes, allergies, G tubes, hospital stays, cultures, poop, ileostomies... then it progressed. I announced my good news about the council and met a dozen other moms that sit on the council at their centers. We started talking about exchanging our best ideas to bring the creme de la creme of care and communication to all centers. A grassroots movement to improve our standards. I engaged in conversations about complementary alternative therapies and how to talk to your specialists about them. I am now in a snowball of information exchange so big I can barely handle it all. And I know as sure as the sun will rise that it's only going to get bigger.

I've got the fire in my belly.

I have known for a while that my calling lay in Jackson's diagnosis. I have been poking it and prodding it waiting for it to announce itself. I know this is it, but HOW? How do I help? And now I can feel it, because I am not alone. I'm not hung up on being 'different', and I can see how we are all the same.

We fight. We fear. We love. Most of all, we LOVE. And we DO NOT give up. We will cheer each other's successes and mourn each other's losses. We will not let an attitude of defeat creep into our regime. We will band together. We will share recipes and experiences and tears and successes.

I am more motivated than I've ever been. We can do this. We can Change the Standard of Thinking.

None of us are alone. None of us are even close. If you need me, I am HERE, and I will help you, or I will find someone who can. And we ALL have something to give. We can support those who have yet to go where we have been. We can push research and funding and lobbying until the cure is found. We can help each other grow and thrive because of and in spite of Cystic Fibrosis.

Thursday, January 13, 2011

Coconut as Superfood

I tried to come up with a clever title for this one, but alas, you're just going to get the business end of things. I've talked a lot about the many ways we supplement J's calorie intake, my favorite of which is coconut oil. As a responsible chatterbox, I have to remind you, I'm not a doctor, dietitian, or any sort of registered expert on the topic. And you should ALWAYS consult your medical team when making alterations to your diet, ESPECIALLY if you have special dietary needs like Cystic Fibrosis. Having said that, I research the living daylights out of things and I'm pretty handy with the brain cells, so here's the low down.

Coconut Oil is good for darn near all of us, and especially good for CFers, and here's why:

MCTs- Coconut Oil is chock full of Medium Chain Triglyceride fatty acids, like Lauric Acid and Caprylic Acid. There are three kinds of fatty acids found in foods. The vast majority of fats in our diets are made up of long chain triglycerides. MCTs, being shorter, are easier for our digestive systems to break down and convert into energy. Aside from being generally beneficial, this is especially helpful for those with Cystic Fibrosis, who struggle with malabsorption of fats and proteins. And and roughly 120 calories per tablespoon, it is a healthy, beneficial way to supplement a CFers calorie needs. Coconut oil also has documented anti-bacterial and anti-viral properties, and thus is widely accepted to have immunity boosting qualities. Rather than enumerating the studies I have read, I can direct you to, where you can read the articles and peer reviewed studies for yourself. I can say in our experience I have plenty of reason to believe that this is true. For one, we have been free of oral and intravenous antibiotics since Jackson's release from the hospital in October, the same time at which I adopted coconut oil as a primary calorie supplement in his diet. (Addendum- since writing this post, J has begun a new course of oral antibiotics, but considering this is his first winter and he went almost 4 months without them, I still think we're ahead of the curve!)


While coconut oil is a food, not a drug, you should be fully educated about it before deciding if it's right for you or your child. It is not recommended for use by those who have had an organ transplant or are otherwise undergoing immunosuppressive therapies, due to the immune strengthening properties. Also, if and when you have decided with your medical team to add coconut oil to your diet, proceed slowly. For an adult, it is said that approximately 4tbs per day will maximize your benefits, but you may want to start with 1 and work up. When we began the big calorie push for Jackson, we quickly moved him up to 2 tbsp per meal, which meant 4-6 per day. AT this level, the anti-bacterial properties flushed all of the good flora out of his intestinal tract, leaving him with diarrhea and diaper rash as if he were on an antibiotic. Once we learned the cause, we backed off on the amount, but kept it as a staple in his diet, and the problems cleared up almost immediately.

Wait, there's more!

In my research of all of the lovely benefits of coconut oil I discovered it has many more uses than just a dietary supplement. Here's where I start to sound like an infomercial. I use it to moisturize my skin, condition my hair, and treat J's diaper rash. The rash that popped up when we gave him too much coconut oil? Treated and healed by coconut oil. Strange but true. It can benefit cracked, dry, winter skin and eczema, work like a lip balm, soothe split ends, and is a cloth diaper friendly butt salve. It's not hard to see why I love it. It also has a very unique quality in that coconut oil is a solid at temperatures under 75 degrees F (about 24 C) and melts at warmer temperatures. It won't take long for you to figure out the 'personality' of the oil when working with it. I love it because on the occasion that I have made Jackson's food too runny, I can pop it in the refrigerator for a minute or so and as the oil cools, it thickens up nicely.

Why are there so many different kinds?

If you go to buy coconut oil, you'll find that there are several varieties to choose from. Here's the skinny on what all that terminology means:

Organic: This means that the coconuts used were not treated with any pesticides

Expeller Pressed: This type of coconut oil is extracted basically by crushing the coconut meat until the oil comes out. No nutritive properties are lost in this method of extraction.

Virgin: means that nothing has been added or removed to the oil. While it has been filtered to remove impurities, it retains all of its nutritive properties and all of the flavor and scent of coconuts.

Refined: This oil has been treated and bleached to remove any color, flavor or scent of coconut. It is the most used type worldwide

. I personally use Organic, expeller pressed, Virgin coconut oil. I don't find the smell or flavor to be offensive or excessively strong, but this is a personal preference.

There are also Fractionated and Hydrogenated versions that do not retain the nutritional properties of Virgin coconut oil, and I don't recommend them for the uses I've discussed.

Where to score some:

I like to order from, but can also easily find coconut oil at Central Market, Whole Foods, or my local health food stores. This was a good way for me to start, since I wasn't sure right away which type we would like best and I could try small batches of different types. I'm now saving up to buy my first gallon-bucket size, since we are using it for so many things. I have had so may questions since I began extolling the virtues of coconut oil. I hope I've been able to give a good background on why we use it and answer some of the most common questions about it.

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.