every bite.

If you are a parent of a child with a Urea Cycle Disorder then you probably have the ubiquitous notebook.

The one that is on the kitchen counter for most of the day, or in your purse when you leave the house. The one that you take to all of the appointments with the dietitian and would never dream of leaving behind on a weekend trip away from home.

The one that chronicles your child’s entire dietary history for that time period between its cover.

Nearly every single bite of food that your child has ever consumed is logged in that notebook. Every morsel weighed to the gram.

How mind blowing that I could literally add up, and then tell you, exactly how many grams of food my child has consumed in his 30 months of living on this planet.

Do you throw your notebook away when it is finally filled?

I cannot throw mine away. Not on your life.

If my house were tragically burned to the ground, and all of us were saved, I would mourn the loss of many things in my house…my violin, my photographs, each my child’s first blankets and yes, these notebooks.

Much like the calendars that hang on my wall all year long, or the daily planner that sits in my purse 365 days of the year, when the time comes to purchase new, the old are tucked away somewhere safe.  For what reason, I don’t really know…other than it feels wrong to log the information so carefully and then just chuck it out like last week’s meatloaf.

…and don’t tell me I can log all of this digitally. I bet you read “books” this way too, eh? Sicko. {kidding-kind of}

Do you get excited about buying a new food journal?

I do.  I have three brand new notebooks ready to be used for this very noble task and I have them put away safely and in the order I want to use them.  I actually have to stop myself from stocking up even further. Even though I will need them, without transplant every bite of food will continue to be logged until the day that he leaves this world, they would get used. But I don’t like to get too far ahead of myself.  Almost like having too big of a stack of new notebooks waiting would be assuming too much.  I do not believe in the concept of tempting the fates, but yeah.   That.

I found this beauty for $3.00 at Waldenbooks last week and I had to rearrange my waiting beauties to allow for this interloper.

I want to start the new year off with vibrancy.  I bought it a little bigger than the last notebook that carried us through the Autumn.  I have hopes and dreams that Corrigan will begin to eat more, use his tube less and less, and that I will need more page space to jot down his intake.

I was careful not to get too carried away and buy the 8 1/2 x 11 size.  I know his limitations, no need to see that bigger notebook on the counter for the next 3 months and be saddened that each day’s entry takes up less than half the page.

Each page=one day of his life.  I tried doubling up on the last notebook, to not waste the paper, but it felt wrong. Each day is a chance to start fresh.

I think that this notebook is, in the words of Goldilocks, “…just right

Did you quickly learn that plain ‘ol school notebooks get yucky over time? That their paper covers cannot handle the occasional wet counter, or spilled food on the pages?  Do you now look for notebooks with covers that can be wiped clean?

I look for journals with snaps or elastic to keep the pages safer when in my bag.  If the notebook does not have a pocket inside of the cover, I will make one so that I can tuck my notecards in safely…the ones that list his most commonly consumed foods with the nutritional information listed.

I log his intake but I also log his sleep patterns.   I can tell you which nights he slept through the night, or which that he was awake from 1am until 1pm.  I log his naps.  I log his appointments.  I log the funny things he does or says.

Corrigan’s entire life is contained inside of these seemingly simple little books.

This is what Corrigan’s brief life looks like sitting on the counter…

It goes without saying (but I will say it anyway!) that I pray for a cure. That one day I will not have to keep track of each bite of his food, or spend my nights worrying about every cough…every fever.  But until that cure is found I hope that Corrigan’s pile of notebooks continues to grow until one day it reaches the ceiling. And I pray that when it reaches the top it is in a room with cathedral ceilings that are 40 feet high.

I pray that not only for Corrigan but for each and every one of you living with this disorder.

May your children be healthy and your stacks get higher and higher!

Mindy

4 thoughts on “every bite.

  1. This makes me sad. I also pray for a cure for your little guy and that his appetite increases along with Nathan’s. If I kept track of Nathan, today would have one entry: 1 nibble of an oreo, possibly 1 gram at most. Unless of course I add Pediasure then I could write down 16 ounces. So far today 16 ounces and 1 gram.

    I know what you mean about keeping track on paper versus electronically, I always love paper calendars, etc. Even if I keep track of appointments and grocery lists electronically I also feel the need to use a pen and paper.

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  2. Oh I long for the day when Lynlee eats enough/something for me to have to buy a notebook! 3 bites of something and she doesn’t usually swallow saves a few trees for us. I’ve decided to be positive though. I’d rather her never ask me for chicken nuggets then me to have to tell her she can’t have them..

    However, I do have a notebook I started day 1 in Pittsburgh. It has every day we were there and now every ammonia and our weights plus meds and formula change.

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  3. Hi Mindy,

    First of all, let me say, I love you! I fell upon your site somehow while researching “what is that gross yellow stuff that is growing from my son’s new g-tube site?”
    and have been smiling ever since. I just read the notebook post, and my husband thought I was reading The Onion because I was laughing out loud. Seriously funny. Maybe it’s just because I can totally relate (how many calories are in that crumb of cookie?), or maybe it’s because I’m delirious from caring for a 2 year old with gastroparesis… but anyway, I can totally relate to everything you say.

    My biggest dilemma since going to the g-tube is measuring his caloric intake in mLs instead of ounces. Then, chasing him down with a bowl when I see “that look” to catch the vomit, measuring it in mLs, and subtracting the calories. I mean, math is certainly not my strong point, but seriously, that is just 8th grade word problem torture.

    Anyway, thanks for posting. I really do love knowing that someone else out there is living my life. It makes me feel a little bit sane 🙂 I wish you the best with Corrigan. He is a beautiful child, and I hope life gets easier for you. If you’re ever in the Cleveland area (haha… that would require a lot of time in the car) please let me know. I’d love to meet you.

    Nicole
    nicspoon@yahoo.com

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    • Nicole,
      A reference to The Onion in regards to my writing? You are now my new best friend (sorry Petra) !!

      Oh catching vomit…one of the more glamorous sides of this kind of parenting. Just wait until you tell people you are just going to put it back in the tube and watch ’em turn ten shades of green.

      Thank you for stopping by the blog (and sticking around to read some!) and yes, if I am ever in Cleveland we will have to have some coffee! And something fattening. What is good to eat in Cleveland?

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