The tapestry of the life of a medically complex family

Archive for the ‘Environmental Challenges’ Category


For some reason, today’s weather thought it’d be nice enough to allow a breeze, maybe even keep itself 70 or so. As I watched the cloud cover, it seemed complete, but not “dark & threatening”. The planets aligned & we also had no doctor appointments & PT was done by 10am. This, my friends, was a day of opportunity!

As soon as the PT left, I gave Trachboy the rest of his breakfast & ran thru the shower. I packed oxygen tanks, suction & prepped a cooling vest just in case Trachboy began to fade. I ran a 5mL saline neb to clear any junk from lungs & airways, dressed the 3some and headed for the back door.

We tried out our local farm & had hoped to pick some of the last strawberries but found that their remaining plants were a long walk & near deplete- thank goodness for the employee who let me know they might not be worth the walk! She recommended we try blueberry picking instead and gave us a wagon for Trachboy & his equipment. Trachboy rode in style while the girls “helped” me to pull him up the sloping hill. We arrived without injury or excess fatigue & got right to work.

We managed to get about 3lbs to purchase and I’d bank the kids ate at least half that much in the field. Trachboy was fatigued but happy to kneel with his oxygen tank & eat purple berries from the bushes. Youngest certainly ate at least twice what she kept. Trachgirl was the champion collector moving bush to bush, occasionally escaping our row, as she foraged for blueberries. All in all, it was a memorable success and we are all so glad the weather cooperated.

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Do you remember when ‘spring’ existed? The days when it was warm enough for a t-shirt by day and cool enough for a sweatshirt at night? I remember it and boy do I miss it.

I am so thankful for the mild winter we had but wish for days when there is no bucket loader removing cash from my account via gas for heating or electric for cooling. Fall days seem to be best for the kids as far as temperatures go. I love the crisp air, the breezes that are more common.

But here we are in spring- a couple months of BLISTERING temperatures away from relief & outdoor play. Today looks like the one reasonable morning before the heat returns so we will rush meds to get outside. Hoping for energy enough for Trachboy so he can truly enjoy this. Then back to cooling vests and AC we will go.

Enjoy your day.

A Parallel Life

My family has lived in New England for multiple generations. My Mom’s family was originally from New Jersey but even her sister moved to New England after her parents died. My Father’s family lived back and forth between a few of the neighboring states here, but always New England after their family arrived in the US during the Potato Famine.

Most of my family, including first cousins, live within 250 miles of Boston, MA. Of 12 first cousins, only 2 live outside this region. There are frequent family get-togethers & the children of my sisters & cousins know each other well from frequent connecting at these gatherings. Well, all children but mine.

Because of my children’s health challenges & susceptibility to illness, we rarely get together with my family members- even those who live 10 minutes away. My nieces and nephews attend schools and gymnastics classes and … birthday parties. [scandalous!] These outings are a part of childhood for most children the US over- but my kids catch everything [by “everything”: they caught Scarlet Fever after attending a RedSox game last June- yes, 2011, not 1906…]. To keep healthy, we bow out of every family gathering when one kid is sick- or ANY relative is ill or feels like an illness is coming on.

When my kids came home, I thought my family was ready to welcome them with open arms. We talked of sharing dinners, playing in back yards, walking along our local bike path… Then my kids seemed a whole lot sicker than my family had prepared for… There were more needs, more medical treatments, more emergency room visits and in-patient stays. One relative even hangs up when I call from the ER- treating each of our emergency trips as tho they are “attention-seeking” vacations. Sometimes you want to just nod & say: “Yeah. My kids are checking in to the Club Med floor here at Children’s…” I live a parallel life with my family- nearby, following along, but never quite in the same place.

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”.


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.


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

Balancing Oxygen Use & FUN!

Yesterday I figured out a way to attach Tav’s oxygen tank to his balance bike in a way that still allowed him to ride and have fun. I moved my car up on the driveway and we had a great time as the kids rode in circles and tested out their balance bike skills. I can’t wait to head to a bike path again soon- now that the weather is finally cool enough for my kids. 🙂 We took some picture to share with you all. ENJOY!

[we need to get back out on the driveway… gotta do trachcare]

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