The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

Month of YES

Here we are. February 4th. The day after our nutrition appointment where they asked about my thoughts on placing another GTube. My thoughts: FEAR. TERROR. TORTURE. My son experienced an incorrectly place GTube that no one realized was blocking the exit to his stomach- for 4 YEARS!! He experienced constant, sustained, SEVERE pain that took him until 3.5 to be able to communicate. We have a little over a month until our GI appointment where they will bring it up again. We have work to do. We need new strategies. This post is going to be about “Step 1”.

Step 1 for us is going to be to try to make food in our house more about “yes” & less about force & control. I know for those who don’t have a child with special developmental & medical needs, you are thinking: “Force & control? That’s MESSED up!” And you’re right, it is… But it’s a long & winding “Failure to Thrive” road that gets a family like ours to this place- & we need your support & encouragement, not judgment.

As my 27-week preemie trached twins head to their 6th birthday in March, they continue to have slow growth & development. FINALLY my 4.5y.o. has a “green light” on her exit from the “slow growth & gain” train. Our February of “YES”.

We have 25 more days of February & we are going to try being more of a “yes” family with food.

YES you can have a banana after waffles at breakfast

YES you can have a couple ounces of water first thing in the AM before hi-calorie Peanut Butter Formula

YES we can talk at the table and try to still get food in

YES you can have a lo-cal orange as your breakfast after finishing PBFormula instead of sausages which give you more calories at your “best meal of the day”…

YES to getting milk & food at the SAME TIME vs. “Fluids first, food after”

YES to veggies & meats delivered at the same time at dinner vs. “Meat first, veggies after” (My kids are the ones who see salad as a dessert food)

My goal in the “Month of YES” is not weight gain- that would be nice, awesome, but not my goal. My goal is changing the culture if meals from “torture to be endured” to … anything less noxious- something I don’t yet have words for. Wish us luck. Wish us “YES”.

Category:

Environmental Challenges, Feeding, kids, Preemie, Special Needs, Trach, Twins

Laughter

We have a stuffed elephant about whom we are writing a family book. At some point, I’ll tell you more about it but for now I have to share my youngest’s page from today- before I fall off the couch in my next fit of laughter. The text reads:
Elephant walked to the other counter and cleaned up after the mouse.

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Note the green sponge in elephant’s hand & giant mouse excrement…

Category:

Environmental Challenges, kids, Memories, Preemie, ROFLcopters

The Deli Drawer

If you’ve read much of my blog, you know my kids & I follow a special diet. We eat organic & homemade, without grains, starches or complex sugars. The Specific Carbohydrate Diet has no processed food of any kind on it- no “deli” items come to mind that need be in our fridge- & good thing.

Currently our deli drawer is housing about $25,000.00 worth of medication. The twins new regimen for inhaled (nebulized) medications includes Tobramycin. TOBI is a string antibiotic that kills the types of bacteria kids with trachs tend to grow out regularly, and occasionally in large enough populations to cause actual illness. Our pulmonologist wants to be pro-active & avoid these infections for the twins while we work to avoid other viral illnesses that might land us in the hospital again this winter. Yay for proactive healthcare & yay insurance.

What’s in your deli drawer?

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Category:

kids, Medicine, Preemie, Special Needs, Trach, Twins

Kairos 1-20-12

A glimpse at our new adventure:

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Category:

kids, Memories, Preemie, Special Needs, Trach, Twins

Hard at Work

The Fearsome 3some compares notes while working on their journals.

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Category:

kids, Twins

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Learning to “Dance”

A friend writes beautiful, thoughtful blog posts as she navigates the world each day this side of nearly unspeakable loss. The other day’s post was written about 13 qualities of a spiritual life. I think my definition of “spiritual” is more about general connectedness to what is beyond ourselves, but her list of qualities got me thinking & responding.

The one that struck me most is:

INTIMACY: If you had an hour to live and could only make one phone call, who would you call, what would you say, and why are you waiting?   Stephen Levine

My only response to this: no one. I would call no one. I would wake all my kids, take out all their favorite foods, sweets for Trachgirl- & not make Trachboy eat. I would wake them & turn on music & dance with them, sing with them, and read to them – & jump on the furniture with them (an especially big dream for my Youngest). I would want to expire in their tired arms’ embraces, listening to their laughter, seeing their smiles. Them, all 4 together. That’s all.

Who would YOU connect with?

Category:

Community, kids