Category: experiencing

going through the motions

Mac Medical Update

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In November, we were optimistic that Mac’s EEG only showed one brief absence seizure trigger by photosensitive (flashing) lights. Unfortunately, on our way back from Louisiana (Dec 30th), Mac had tonic-clonic (grand mal) seizure. It was terrifying and treated at the ER. We believe, and his neurologist agreed, the bright sun flashing through the tree line on the interstate triggered the seizure while we were driving.

Today we saw his neurologist for prognosis & treatment. Statically speaking, tonic-clonic seizures are a typical phase of generalized epilepsy once a person with absence seizures reaches puberty. Mac started puberty in January 2019. At this time, you will slowly see a decrease in absence seizures, and tonic-clonic episodes will begin to manifest.

His neurologist reassured us tonic-clonic seizures were treatable with medication, and we had lots of options to choose from to find the right cocktail for Mac. He was hopeful that Mac only had one tonic-clonic since the 30th. We immediately took measures (blue-tinted glasses inside and dark sunglasses outside) to eliminate triggers and prevention.

Mac will be starting Zonegran today for the tonic-clonic seizures and maintaining all his other medications at present levels. We are continuing the Charlotte’s Web CBD oil because the benefits outweigh the cost. Hopefully, one day the FDA will change the required diagnosis for Epidiolex, and we can finally get that prescription filled 🤷🏻‍♀️.

In a nutshell, Mac is in the next phase of generalized epilepsy, and our mission is to medicate, treat, and take all measures to prevent any more seizures.

Thanks for the continued support, thoughts, and prayers for Mac and our family ❤️.

Colors and Behavior

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Last week Mac’s teacher text me because he was having a rough morning.

I immediately knew the culprit because I questioned the red shirt I chose for him that morning.

Thankfully all those color theory classes I took are still paying off, especially as a mom to an Autistic child who senses and experiences things 900 times more than neurotypical children.

Mom’s are the Subject Matter Experts

Mr Sonnier Goes to Washington

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Mac on Capitol Hill
Mac and Daddy Steven Udvar-Hazy Air and Space Smithsonian Discovery Space Shuttle


Mac and Daddy Space Shuttle Discovery
Mac’s DC favorite……the Metro Blue Line
Mac and Daddy Riding the Metro Blue Line in DC
Waiting for the Blue Line DC Metro

Neurotypical Behavior

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Because Autism parents rarely experience it, I wanted to share Mac’s recent neuro-typical 12 year old boy behavior.  We put up a little family pool in the back for him to cool off in the afternoons.  I’ve been getting in with him and practicing putting his head back to wet his hair to get him more comfortable with the water.  99% of the time all he wants to do is spit water at me and giggle.  Obviously this isn’t appropriate behavior, so I am trying to curb it as much as I can.  However, when I see his silliness and engaging in what I know typical 12 year old boys do, I can’t help but smile ☺️🧩

Cousins in Eastern NC

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Tina and Rosie

This evening I had the pleasure of hanging out with my cousin and some of my favorite fellas from high school. I love that geography and the passage of time hasn’t diminish us and we fall right back into place. You will always be home. And although I swore I’d never marry someone from Belle Chasse, you remind me why my people will always have my heart. You remind me why my senior year of high school was the best of times. In the transient life of a military spouse, it’s hard to find people who are trustworthy and reliable. Tonight was refreshing knowing if I needed anything, you would be there. #watereddownbarryquirk

Celebrating the Little Things

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It’s the little things. Mac has always struggled to blow out candles. While in PK, his teacher presented him with a birthday cake toy he loved. He would try to blow the plastic candles and it would play music. He worked very hard but still struggled.

Finally today on his 12th birthday, we encouraged him and Mac blew out his numbered candles all on his own.

Celebrating the little things on our Autism journey.

Happy Military Spouse Appreciation Day 2018

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All military spouses have Murphy’s Law stories of if it breaks, it’s always when the service member is gone. When I think about my 21 years as a military spouse, this photo represents the real struggle.
Damon was already “advance party” at his new duty station while Mac (2 years old) and I stayed behind to sell the house, TMO and make the 14 hour flight to Japan.
Our front toilet wouldn’t flush properly and the buyer’s housing inspector was coming next week. My BFF came to help me and captured what was a vain toilet snaking which eventually produced a wooden puzzle of a HELICOPTER (AIR WINGER!!!!). A big thank you to my Dad who patched a hole in the ceiling that I created and fell through while cleaning out the attic. THIS WAS ALL IN THE SAME WEEK!!!!
#SALTYSPOUSE #militaryspouseappreciationday

John Anthony Gillis

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I am obsessive fangirl. People who know me likely associate me with my childhood obsession, Dweezil Zappa and most recently The Big Lebowski and Jack White.

Jack White didn’t catch my attention until his Raconteurs/Dead Weather years. I’m a fan of the White Stripes but when he started expanding his work to include other bands, Loretta Lynn, Jay-Z, etc., I was blown away by his talent. The film ‘It Might Get Loud’ interviews legendary guitarist Jimmy Page (I’m a HUGE Led Zeppelin fan), The Edge and Jack White. Experiencing the raw talent of these men and to be put into the same category as Jimmy Page is one of the highest compliments. Jack White can and has held his own in the music industry. Rock, blues and even country musicians line up to work with him because they appreciate his diversity and talent.

Last weekend, I saw Jack live at the 2018 New Orleans Jazz & Heritage Festival. My world’s were colliding, my all time favorite artist in my hometown. I was giddy like a Beatles fangirl, I knew I would cry when I saw him but also worried I would faint at the sight of him. Luckily it was only tears. Standing in the general admission section I was able to impress the guy in front of me of my Jack White knowledge that he let me stand in front of him (bringing me one person from the front barricade) to give this fangirl a better view. My obsessiveness paid off from knowing a few things about Jack that most people would probably care less about. When the show began, I took off my sunglasses because I wanted to get a pure unfiltered view of him. It took three days to get my voice back from all the screaming I did. Screaming like a 7th grader.

Jack’s belief of getting back to the roots of recording and not using Autotune certainly paid off because that was one of the best live performances I’ve ever experienced. Also, you can’t go wrong with an outdoor venue.

This was a bucketlist item for me. When the show was over I told the universe, “ok, I can die now.”