I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Tuesday, January 3, 2017

More Time to Play


Big Deal Cystic Fibrosis Blessings from 2016, #1 and #2

What a wild year! We loved it! Had great adventures! Had many opportunities to learn and did learn about our kids and their Cystic Fibrosis. Many things lay ahead for us in 2017 too. We will most likely get Maelee on the Orkambi (#wehopetothanktheinsurance, #likewewerentalreadyanexpensivefamily) drug which is a spanking new med made specifically for our kids mutation of Cystic Fibrosis (#DF508), the others aren’t old enough yet, but she is so we are working on it!

Since one of my 2017 goals is to write more I plan on splitting this 2016 CF blessings post into a few pieces. Since no one likes to read a novellic blog post I’ll keep this post to two Big Deal Cystic Fibrosis blessing for 2016, and plan to end the posts by the end of January 2017.

The first two Big Deal Cystic Fibrosis blessings walk together since the one gave the other its existence.

Imagine this. You have this plastic thing wedged inside of your stomach. It’s held in place with a balloon of air on the inside of your stomach and a plastic valve for ease of use on the outside of your stomach. You use this button to give yourself extra calories directly into your stomach while you sleep since you can’t physically eat enough calories to sustain or gain weight on your own during that day. Are you imagining that?

Now on top of this plastic button that has been installed in your stomach you can’t just use it and cruise it - you have to take medicine for those calories to work right when they get into you while your sleeping. But wait! What? Your sleeping so how are you supposed to take medicine?? You can’t, so you do your best to take some before and after your tube feed. But that is not good enough, your pancreas doesn’t work and you need more enzymes during the feed. The result is pooping in the middle of the night and stomach cramps and pain from inevitable malabsorption of the calories…………….

ENTER NEW INVENTION: DU DA DA DA! Relizorb!
This is a plastic cartridge full of the medicine (pancreatic enzymes you need) that you can attach to your formula tube so that is slowly administers enzymes to you with your calories while you sleep! How fantastic! Really I can’t use enough exclamation marks about how neat it is that this invention is a thing now! Thank you inventor! Thank you for helping g-tube patients around the world! You are my hero you mystery scientist! I hope somehow you get credit for this and your beautiful idea wasn’t taken from you by a big pharmaceutical corporation in some terrible and sad-make-a-move-about-it-someday-way. Thank you with all my mother heart! OK you can stop imagining now.

So one night while we are hooking up Orson to his night feed, Frank and I start talking about how amazing this invention is and what a very specific idea and type of person around the world it is blessing (Cystic Fibrosis and other GI patients who need enzymes while tube feeding). Charles, our only child without Cystic Fibrosis who is already super into science and how stuff works PERKS up when he hears us say the word “invention.”

We then dive into a conversation about how yes, someone thought of this idea, and yes they made it work through lots and lots of hard work and idea sharing until now its blessing lives and helping people.  

Immediately Charles’ wheels start turning and he ends the conversation by announcing that he will someday invent something to help Orson and Maelee and Ruby with their Cystic Fibrosis. See, that is how the second blessing walks with the first. The spectacular cartridge of enzymes for tube feeders, Relizorb, inspired Charles to think of his CF invention. Ready for your mind to explode?

Charles is going to invent a machine that someone with Cystic Fibrosis can hook up to while they sleep. This machine will do all their treatments for them while they are sleeping. All their lung treatments, and some fancy new GI treatments so they won’t have to take enzymes during the day. All of it will be done at night during sleep so that the person can wake up and have to spend no time doing treatments. Then as Charles so very cleverly and sweetly thought of, “Orson will have more time to play with me.” Because that is one of the ways that Cystic Fibrosis effects these best friend brothers, less play time. Which of course to me was the loveliest invention Charles could ever think of.

With Charles’ natural traits of obedience and love of law and order I can see him really being a successful scientist. I believe that Charles could figure this out one day. The motivation is real. I’m so proud of my children!

Orson for all of 2016 (except for Saturdays and some holidays and travel days thrown in) allowed himself to be hooked up, tethered really, to an IV pole to get “medical food” or as we call it “milkshakes” every night. He slept wrapped up in tubing and allowed it to be normal all those nights. He woke up to a loud alarm blaring at him at 1am all of those nights to get unhooked from his machine, use the bathroom, and get himself back to sleep – he’s five years old! Amazing! Charles sleeps feet away from Orson’s rhythmic pump and one AM alarm. Does it disturb him every night? Probably yes. Does he wake up and complain? Never. Amazing!

Yep I am bursting with pride for a son who does this hard thing and I’m proud of another son who has never once complained about helping his brother get through the hard thing. AND on top of it is determined to invent a life improving Cystic Fibrosis invention in his lifetime. Just wait, you’ll see.  

#BigDealCysticFibrosisBlessings2016 #CFIsNotForever #BurstingWithPride

The contraption with the purple lid is Relizorb




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