Saturday, March 31, 2012

King of His Jungle

Add one more nick name to the list for August. In addition to Gus, Augey, Gus-Gus, G-man, Gusto, Augs, and Gussy, we now have The Lion. It couldn’t be more appropriate.

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Gus still aspirates when he swallows liquid that isn’t thickened. (Unthickened liquid seeps down his wind pipe instead of heading to his belly.) In the short term, he coughs and wheezes bubbles until the liquid clears. The long term risk is the potential for a pneumonia if any liquid remains in the lungs. Knock on wood, we haven’t encountered that situation to date.

Three specialists follow Gus’ swallowing issue: the ears/nose/throat (ENT) doctor, the gastroenterologist (sp?), and the pulmonologist. Up to this point, no one has been able to see anything wrong in his epiglottis (the valve in your throat that closes for food/drink or opens for air) so the conventional wisdom has been that Gus’ low muscle tone is the cause for the aspiration. Despite Gus’ excellent progress in physical therapy (THE WIFE tearfully captured his first official steps on video this week,) his posture is still slightly frumpy when he is at rest which makes sense considering he isn’t walking full-time yet.

During our last ENT visit, the doctor confirmed that Gus still has an accumulation of fluid in one of his ears. As many parents of kids with DS predicted, the doctor recommended that Gus receive tubes. In addition to significantly reducing the risk of ear infection, the absence of fluid in the ear should also help to maximize his speech development. Of course, we are on board even though it means putting our little Lion under anesthesia. Since Gus will be sedated already, the three specialists will also use the opportunity to look at the epiglottis and take tissue samples for various other tests. The procedure is scheduled for May.

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At night, when we’ve finally made it to eight o’clock, Greta goes to bed first. THE WIFE or I or both of us will serenade her with good night songs of her request (usually Twinkle, ABCD, or Doe a Deer.) G-man pulls himself up at the side rail of his sister’s bed, and rocks his body side to side in rhythm to the song. We say our goodnights and head downstairs to the living room.

Gus sips on his thickened milk as we breeze through an episode of Jeopardy. He sometimes claps when the audience applauds a contestant who has swept a category. Or he crawls around on all fours with a sippy cup dangling from his mouth. When the familiar anthem of Final Jeopardy plays, G-man again busts into the side to side dance.

At last, the middle child is hypothetically ready for bed. We sign “I love you” to his mommy and his baby sister. We blow kisses. He usually sticks out his tongue and raspberries towards THE WIFE and Tilly. I head upstairs and deliver Gus to his crib. Then I return downstairs. This is when the new nick name was born a few months ago.

Sometimes, Gus will go to sleep right away. Sometimes, he does not. On the latter occasions, Gus will periodically roar as if upset because we have caged the Lion and he still wants to play. The roar will continue intermittently for the next thirty minutes. THE WIFE and I just giggle and shake our heads.

Every once in a while, I will peak my head into The Lion’s den. Usually, our little king of the jungle is standing at the crib, dancing his side to side dance, and laughing towards the night light that casts shadows of his movements. I jokingly accost my beast for not being asleep. He barks at me in reply with a short laughing yell. I lay my Lion down but usually he is back on his feet at the side of his cage before I’ve exited the room.

I rejoin THE WIFE on our couch and we listen as the Lion chats, laughs, and roars with less frequency until he finally goes to sleep.

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Sometimes I bristle when someone talks about how kids with Down Syndrome are wonderful. The generalization is of course intended to be a compliment. And I don’t necessarily disagree. I think I understand the commenter’s intent. But the statement is too broad for me to just accept silently without comment.

Gus can be a fresh little boy who scratches his older sister’s nose, gouges his daddy’s eye ball, and yanks on his mommy’s hair. He spits out his medicine, oftentimes directly into my mouth or face. He’s a mischievous little devil who will make a break for the open kitchen closet door the second his parents let down their guard. When left alone in a room, the wrecking ball will tear apart anything within reach: drawstrings from blinds, electrical cords to appliances, his baby sister’s pacifiers or bottles, an unguarded potty, etc.

Notwithstanding his bouts of occasional misbehavior - like any typical boy - August is wonderful. While his resilience and resolve against the diverse challenges that accompany his diagnosis impress me every day, his essence as a person is not defined by Down Syndrome. He is our happy boy who laughs and plays, hugs and kisses, dances to the beat of Final Jeopardy, and roars aloud when it’s time to go to sleep. At least within our circle of loved ones, we celebrate that he is atypical. We wouldn’t want him any other way.

Besides, what would you expect from someone with the heart of a Lion?

Saturday, March 24, 2012

Potpourri

Since the last post, I’ve had a few quiet moments where I sat down at the end of the day to bang out a few ideas but then one of the kids had the audacity to interrupt me with their crying because of a bad dream, ear infection, teething, or whathaveyou. To put the effort in perspective, my first attempt at getting this post up was on February 27. Barring an unforeseen emergency, I hope to crank this out for publication by tomorrow morning – March 25.

Knock on wood, we appear to be turning a corner finally with Greta and Gus healthy and Tilly inching ever so slowly towards longer bouts of time between feedings. The nice weather certainly helps, too. Without further ado, today’s post is a hodgepodge of prior incomplete efforts finally concluded. Enjoy.

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As much as I give THE WIFE grief for her uncanny ability to cry, even from say a Sarah McLachlan commercial advocating prevention of cruelty to animals, I’ve been known to turn the waterworks on pretty easily in my advancing age. This week, I must confess there was a moment when the room got a little dusty.

Geography is a bit of a strange obsession to me, my brother, and my father. Maybe the interest goes back to long car rides when the three of us played “City, State, Country” together. Or perhaps my victory in our eighth grade geography bee at good ole Hooksett Memorial planted the seed.

The man love for my buddy “Uncle” Randy went from casual to intense when we discovered a shared passion for the Almanac. To this day, we still quiz each other on anything from “bodies of water” to “international capitals” to “highest elevations” as our wives kibbitz in a different room.

For whatever reason, I felt compelled this week to instill the excitement of geography upon Greta. I pulled out the Almanac, a World Atlas, and a globe. Next I started the hype propaganda to Gigi by doing the old “I’ve got a surprise for you!” She grew giddier with each “What is it?!” after I refused to tell her. Finally, we sat down and recapped the geography we know to date.

We live on the planet Earth in a country called USA in a state called Massachusetts in a town called Easton. Check. I showed her the globe, which she spun around multiple times. Gus suddenly showed interest and crawled over. Nice, he was in too!

ME: Okay, so (pointing) here is where we live. But tonight, we’re going to learn about a new country. I’m gonna spin the globe and then you are gonna point with your finger to any spot on the planet. Then, we’ll look at that country in the Atlas and read about it in the Almanac! Doesn’t that sound amazing!?

GRETA: (preoccupied because I stopped the globe from spinning)

GUS: (making out with a swath of Europe)

Right. Maybe the excitement level wasn’t quite as high as I was hoping for, but we did learn a little bit about Angola that night.

I was a little deflated at the letdown. But just when we were about to finish the lesson, Greta came upon the Almanac’s pages that contain the flags of every country in the world. She thought it was so cool. Suddenly, it felt like someone had just sliced up some onions under my nose.

I tore the pages out of the Almanac with the flags (don’t worry, it was 2008’s version and THE WIFE gives me a new edition every year for Christmas) and Greta carried them around with her for the night. She made me so proud. I can’t wait until she starts taking Social Studies.

So, it’s official. Training for Greta’s and Gus’ geography bees of 2022 and 2024 has begun. Griswald, Uncle Tom, and Uncle Randy, bring your questions with you next time you’re over to see the kids.

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We moms, dads, and caretakers often find it necessary in the heat of the moment to bust into song. Sometimes, it may be a last ditch desperate attempt to somehow convince the child to [fill in the blank]: take medicine, change a diaper, eat something, change clothes, etc. As for the T household, we have several of those moments on a daily basis. As a result, we have developed a few go-to jingles.

Admittedly, we’re not exactly talking Lennon-McCartney magic or even LMFAO’s 15 minutes of fame for that matter. Nevertheless, in the spirit of the White Album (Beatles), Black Album (Jay-Z), Grey Album (Danger Mouse), and Blue Album (Weezer), I present a new addition.

In honor of Greta’s current two favorite colors, I present the Purple-Pink Album. Song list with duration and songwriter is as follows:

1. Cooperation (:30) (M. Teravainen – D. Teravainen)

2. Boyfriend (:30) (N. Cooney)

3. I’m So Proud of You (:20) (M. Teravainen)

4. Cheerios (:15) (D. Teravainen)

5. Team [Not] On Vacation (:40) (M. Teravainen)

6. Pee Pee on the Potty (:10) (M. Teravainen)

B-Side

1. Shake, Shake, Shake (:20) (M. Teravainen)

2. Arms Up (:15) (D. Teravainen)

If the Purple-Pink Album had a cover, then we’d have an image of Ooloo – Greta’s purple alien friend from the planet Cookachoo, with three eyes and five to eight tentacles depending on the drawing, a pink vest, and travels through the galaxy in his purple space ship in search of purple foods but especially purple grapes, who occasionally shows up in Greta’s closet when she wakes up in the morning before breakfast.

Obviously, the inner sleeve of our album (now they’re called “digital booklets” and available for download in .pdf form) would contain the lyrics – perhaps even various pictures of the band inspired by the music. Font and overall style selection would belong to whichever one of our graphic designer friends agreed to oversee this portion of the project on a significantly reduced rate (translation: pro bono.) To the extent we currently have no graphic designer on retainer, we’ll just italicize the lyrics and leave the song’s backstory in an un-italicized Calibri font.

Cooperation

Cooperation. Cooperation. Co-OP-er-ation. Cooperation. Cooperation. I like co-op-er-ators.

(Repeat three times.)

That’s right. That’s it. Just imagine frantic and spastic efforts to dress Gus or Greta before the other jams his/her finger into a socket.

Boyfriend

You are my boyfriend. You are my boyfriend. I. Love. My Augey.

You are my boyfriend. You are my boyfriend. I. Love. You. Boom-boom.

Nana is world famous for launching into this jam when she’s trying to get Gus out of a fussy mood. It always works.

I’m So Proud of You

I’m so proud of you. (Clap clap) I’m so proud of you. (Clap clap) I’m so proud, I’m so proud, I’m so proud of you. (Clap clap.)

THE WIFE conjured this gem up recently when Greta was refusing to take Amoxicillin two ear infections ago. It worked. We sing it to Gus, too, when he gets fussy about taking his antacids.

Cheerios

Cheer-ee-os. Cheer-ee-os. Cheer-ee-os , I eat you for breakfast.

Cheer-ee-os. Cheer-ee-os. Cheer-ee-os, don’t put em up your nose.

Self-explanatory. We had a situation that we hoped to avoid again.

Team [Not] On Vacation

We’re a team [not] on vay-cay-shon. We’re a team [not] on vay-cay-shon.

A team [not] on vay-CAY (pause – big finish) SHON!

THE WIFE and I took a trip to San Fran a few years back. The weather seemed dumpy whenever we ventured outside. I started to get poopy pants. Fortunately, THE WIFE rallied our spirits with her song about how we were ON vacation. My mood rallied and so did the weather. Once we returned home and immersed ourselves in reality, the lyrics changed to “we’re a team NOT on va-cay-shon!” Get it? No? Well, at least it’s funny to us.

Pee-Pee on the Potty

Pee Pee on the Pah-tee. Pee Pee on the Pah-tee. Yeah! (jazz hands optional)

Now that Gigi has number one figured out, you can probably guess where the re-mix version of this song is going.

B-Side

Shake, Shake, Shake

You gotta shake, shake, shake, shake it off. (Repeat as necessary.)

THE WIFE sings this song quickly and urgently after Greta bites her tongue or her cheek, which happens surprisingly often by the way. Its lack of depth, however, keeps it off the A-side. Because that side clearly contains songs with very deep lyrics.

Arms Up

It’s bath time. Arms up! Got to get this shirt off before you can go in the tub.

Hey, c’mon. Get your arms up. I love you bub.

Seriously, though, move your goddam arms up. It’s been a long day and I’m really tired of playing games.

You little pain in the ass, get your tiny little wings up in the air for Christ’s sake. Where’s my glass of wine?

I’m the first to admit this song’s probably not going to make it in a Disney movie.

And there you have the Purple-Pink Album. Look for it on iTunes next month.