suction suction suction

It's funny how we curse the very things we need so desperately.

The machines in my house, for example. I cannot stand the sound of the beeping. I loathe the sound of the suction machine. and the Darth Vader-like whasps of the oxygen machine, running incessantly in the hallway, irritate me to no end.

yet all these machines are keeping my daughter alive. i should LOVE the sounds. I'm tryin. it's a daily exercise in gratitude. I'm audibly sensitive--I cannot stand the sound of the tv blaring all day, loud car commercials, dogs barking for hours, things of that nature (strange really, considering I love heavy metal and my favorite band is TOOL), and so does Amelie. she HATED fireworks. they terrified her. loud noises made her panic and cover her ears, and she would say, "Yeah Mommy, that hursss my eahrs." As I sit here, in the quiet darkness of the living room and a house already put to bed, the oxygen machine is the constant reminder that my daughter can no longer breathe well on her own.

She requires suction like crazy. The secretions in her mouth are thick, she doesn't swallow hardly at all, and we can no longer give her yogurt or ice cream. It's kind of devastating. esp since I know she wants to TASTE something. I put a lollipop on her tongue today, but it produced so much saliva that I was worried she'd joke. A few nights ago, she needed suction almost every hour all night long, and was coughing so much from the darn tube (likely irritating her throat), it was so hard to witness. The only way we can make her more comfortable is to give her THC and OXY, which works for a little while. I have to be honest: there are times when she's suffering, despite our best efforts to make her comfortable. There are times she looks at me, RIGHT IN THE EYES, those beautifully rich brown eyes, and I can tell she's struggling. That's when I SMILE as big as I can, SMILE, brighten my eyes, and tell her how strong she is.


Amelie has been seizure FREE since last Wednesday!!! Doctors ordered a Phenobarbital loading dose (2.5times the regular dose), she was FLOORED for two solid days. I mean, totally sedated. I would change her diaper and she wouldn't even peep open an eyelid. But the seizures stopped!!! (She's likely still having sub-clinical seizures, but the only way to discern that is to hook her up to EEG at the hospital, which we ain't doin.) For now, we are SO RELIEVED!!! I feel like we have more time now, and we can actually leave the house here and there, like we've been given a manumission from seizure frenzy.

The last few days have been a ton of work. I've been burn-out, haven't had any energy (likely due to the immoral amount of carbs I've been consuming, I mean seriously. eating like it's my job. as Hubbs says, "babe, even if it's homemade from organic unicorns, it's still butter and pasta.") and the night shifts are rough. Luckily, we get more nursing help next week! Praise the LAWDDD!

Amelie does, however, still make her little noises when she's angry, which I totally love. Sometimes I take a little too long to clean her ears just so I can hear her growl at me. I love the growl. I say, "growlin at mama like the big bad wolf!"

One that note, check out what someone sent us! it's incredible. I LOVE this story, Little Red Riding Hood Is a a Ninja!! Are you kidding me?!?! amazing! Lil Red AND Grandma ("in her gi, straight from tai chi") kick the wolf's ass:
"She got a good grip, thew him over her hip, and the wolf wound up flat on his back."

I've read it probably like 5 times. to myself. and another 5 to Brave and Lu's. it poetically ends with the Big Bad Wolf accepting defeat, agreeing to stop eating red meat, where he:

"Enrolled at the Downward Dog Center, where his tension began to decrease,

He studied with yogis,

said no to meat hoagies,

and felt, at last, truly at peace."

Namaste, Big Bad Wolf, Namaste.

P.S. whoever sent this, please email me so we can thank you! There was no card or note in the box)