Thompson, Adelia

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"Are you gonna give me a shot?"

"Well, what we're gonna do is put a mask over your face, give you this really yummy syrup to drink, and it'll make you sleepy like you're in the clouds…then when you're sleeping we'll put the I.V…."

"So you're gonna give me a shot."

This wasn't Adelia's first rodeo.
 
 
Even though she suspected a shot was in her future…this is her. Smiling, going with the flow, saying thank you even when it hurts. Reassuring us that she's good, she's got this.

This was our UCLA sleep over. Adelia underwent brain testing to try to get a handle on her illness.

"We think its Ataxic Cerebral Palsy. We don't know for sure. We think it's Ataxic Cerebral Palsy and something else. We don't know what else. We don't know why. We think she has hundreds of mini seizures a day, but we don't know."

After multiple MRI's, CT Scans, genetic testing, blood tests, x-rays, physical therapy...

We don't know, we don't know, we don't know…the mantra.
 
 
"We don't think she really needs to be put under for this procedure. It doesn't hurt that much and she's been under anesthetic a lot."

It never hurts them…every time they do it to someone else they never feel a thing.

Kayla says. " She can't hold still long enough. She has hyper sensitivity so even if it doesn't hurt, she thinks it does. She has a long road ahead of her and I don't want her to feel more terrified than she already does every time she comes to the hospital."

"Let's ask her. We can always stop and sedate her if it looks like its not gonna work."

Adelia goes along. She nods yes, she can do it, she's got this.
 
 
Like an Olympian, she persevered. Held still for 45 minutes while they did this. One plug at a time.

Part of the process is holding an air gun over each taped plug to dry the glue for ten seconds. 

Adelia did the counting. 

Half the time in Spanish.

Yeah, she's got this.

Me and Kayla made soothing sounds, talked to her. But, as always, Kayla did most the heavy lifting. She let Adelia count her freckles, measure her fingers with a measuring tape, played number games, letter games, held her hand. It was almost more than I could take, which is why there are no photos.

There's nothing worse than seeing your child sick, scared, in pain. To see your child's pain as she watches her child 's pain is a double dose of the most abject misery.

But, like Adelia, Kayla's a thoroughbred who can pull it out when the stakes are high. And she did, all the way to the finish line.
 
 
This cool pirate turban almost made up for the torturous drudgery. But the peanut butter and the graham crackers sealed the deal. 

Now we're talkin.'
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Are there any words to describe the relief when its over? 

No. So I won't try to find any.
 
 
Mimi and Mom getting our Hungry, Hungry Hippo asses kicked.

Yeah, those are my sock monkey jammies. Don't judge me.
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First thing this morning after sleeping all night with those brain plugs. 

Smiling her big Adelia smile, letting us know all is well with her.

She looks happy, content, without a worry.

So why does it still feel hard to breathe?
 

 

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