The tapestry of the life of a medically complex family

Archive for the ‘ROFLcopters’ Category

GERD is SO Much Fun

After a late morning albuterol/ ipratropium round for wheezing break-through, my kids began playing ‘clinic’ with the teddy bears from their beds.

As they prep my son’s bear for a ‘procedure’, my youngest picks him up, places him close to her nose & SNIFFFFFS deeply. “He smells TERRIBLE!” she says before stuffing him under her sister’s nose & asking her to smell.

SNIFFFFFF goes my older daughter. “Ew! This bear smells GROSS! Smell it Momma!”

As she hands me the bear, I realize the leg is moist. Keeping it a good distance from my nose, I sniff lightly.

UGH!!! Vomit. The bear’s leg smells like VOMIT.

Thanks, GERD & overnight GTube feeds. Thanks very much.

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My Youngest Plans for Marriage

My three youngest sit talking at the table.

My son says: “When I’m big, I’m gonna marry Momma.”

I ask him why- what about me makes him want to marry me. He says: “Momma, you’re LOVELY!”

His twin plans to marry the son of one of our former nurses- because the nurse “will be too OLD to marry me when I’m grown up”.

My youngest states: “When I grow up, I’m gonna marry (my biggest brother). I’m gonna grow up … & MARRY HIM!”

When asked why, what is he like that makes you want to marry him?

Her response: “Bacon. He’s bacon.”

Self Care

My son can dress himself… most days.

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Another FIRST

What a fun family first!

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A New Way of Egress

Working to address the need for my kids to get themselves in & out of their high cribs themselves as they have gained so much weight some nurses cannot lift them, THIS is what I came up with…

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Chasing

My kids are 6.5, 6.5 & 5.2 years old. They have never been to a parade. They have seen Macy’s parade on Thanksgiving & a bit of the one’s on New Year’s but have no real concept that everyday people actually go to & SEE these things in person. Having preemies that include twins with trachs, and a 5 year old with her own respiratory issues, fall & winter & early spring are times spent hunkering down away from germs, versus being out attending events. Group activities like parades or fairs never make the cut as “worth the risk” when thinking about my kids vulnerabilities.

As we began talking about Thanksgiving, my son remembered the Thanksgiving parade we have watched the last few years. (We are not a TV-watching family. TV is an ‘event’ in our home- so fairly memorable.) He asked if the parade was going to happen on Thanksgiving again- perseverative question cycles are a daily occurrence. I told him that it would be on and since that day about a week ago, he has checked in about 3 or 4 thousand times on the topic. (Thank you Autism)

I checked our town website and found out WE have a Veteran’s Day parade & that it was early Sunday afternoon. It happened to fall between all the multiple medical treatments that make up our life as a family with 3 complex medical kiddos, and it seemed reasonable to delay lunch to make it happen. He & his sister’s were excited to be going to see their first parade.

We drove downtown because my kids fatigue levels are way too high to make a half mile walk. By the time we parked, packed the stroller, got my 2 weakest kids buckled in, it was very near time for the parade to start. Altho it was just a short walk to the firehouse, it took us until 1:01p to get there. Yep. ONE MINUTE after the parade began. They saw the veteran’s on motorcycles and the fire engine that were the tail end of the parade. We tried to catch up- I put my other child on my shoulders so I could walk briskly while pushing the other 2. They saw the backs of our high school marching band…

Basically, my kids ALMOST saw their first parade this weekend.

But they enjoyed themselves anyway.

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Seriously- Romance?

I sign on for the National Poetry Month Blogroll at BlogHer and their prompts already have veered far from my life. The best romantic poem? Seriously? Who reads those? More importantly: who CAN read those??

Don’t get me wrong, I have LOTS of love in my life- just none of a romantic nature. My children love me to the moon & back, & I them. Some of my nurses love me, in addition to loving my kids. They show this through their thoughtful encouragement for the day-to-day, in baking for friends & being sure to bring me some, by repairing a broken screen door during the overnight shift. My kids’ biological and adoptive families share love with us all the time, but “romance”- LOL

At one-point, a few friends suggested I post a profile on an online dating site- they even began crafting my profile description. In keeping with the “spirit” of the BlogHer challenge, and honoring poetry in my posts all month long, here is my version of my poetic personal ad:

SWF likes:

Leisurely strolls through hospital halls

Internet shopping, not crowd-filled malls

Long, 3-4 hour, grain-free meals

Ortho-clogs, ne’er spikey heels.

 

Tall & smart & kind & stressed

Medical emergencies at her best

Many children at her knee

Happy, smiling, busy bee

 

Seeks:

Kind & strong & loving man

Medical training a plus my friend.

Helicopter pilot a valued skill-

Quick land on hospitals for a thrill-

Soft of heart & quick of mind

Cherished partner love to find.

 

Not thinking it would work, but there it is: romance. 🙂