Monthly Archives: May 2012

Vocab we never wanted to learn.

Words I’ve begun to hate hearing… Machines that are infiltrating our lives with wires and tubes…

———

Bolus: the medical word for a ‘meal’. In contrast to the continuous slow volume feed that we do overnight. Elie currently gets 4 bolus feeds per day, then continuous drip for 9 hours overnight.

———

———

Pulse-ox: Heart rate and oxygen saturation monitor. Magically measured by sending light through Elie’s big toe.

———

———

Insufflator-Exsufflator : Our ‘Cough Assist’ machine. Elie’s nemesis. Forces air into her lungs through a mask, then sucks it back out, mimicking a cough.

———

———

Atelectasis : the collapse of part or all of a lung.

———

———

Contracture : painful tightening of tendons due to disuse of opposing muscles.

———

———

Percussion therapy : beating the chest wall of your sweet baby with a rubber cup to loosen lung secretions.

———

———

Katy Beckett Waiver : a Medicaid extension available in Georgia to help families who make too much money to qualify for standard Medicaid but still need help paying their medical bills.

———

Categories: Uncategorized | 6 Comments

Happy 5 Months, Elie Bean!

Categories: Uncategorized | 9 Comments

Beach pics!

 

Categories: Uncategorized | 6 Comments

Crib mattress?

Anyone have a crib mattress they’d like to get rid of in the ATL? I’d like to raise Elie up in her crib at night so I can get to her more easily (we’ll just be using it like a box spring, so condition really doesn’t matter)

Categories: Uncategorized | 6 Comments

Where we’ve been

We got home Sunday after a fabulous trip to Charleston to be there as Elie’s aunt, Dana, married Elie’s (now official) Uncle Nick! Elie got to see most of her family, hang out on the beach, dress up fancy, and meet some wonderful new friends.

Monday we had an appointment with the muscular dystrophy clinic and then a follow up with Dr Brooks (have we mentioned how much we love this woman?). She clarified some discrepancies in therapy techniques we learned in the hospital. We’ll be administering percussion and then the Cough Assist at least twice a day moving forward.

Yesterday I met with Bayada nursing care, which went very well and I’m very much looking forward to the help!

Today we are headed back to the surgery clinic since Bean has had some leakage/irritation/pain/interrupted sleep since we got back and we want them to evaluate her tube for size/infection so we can all feel and sleep a little better.

So it’s been a busy week and half, but I promise to post pictures from last week soon!

UPDATE: back from our appt– Elie’s T-button stitches were all infected. The doctor went ahead and cut them all off even though they were supposed to dissolve. Elie seems to already feel so much better with them off! Antibiotics to be purchased and hopefully will get rid of the rest. To anyone considering GTube with the t-fastener buttons, I do not recommend them, just go with old fashioned stitches, so much easier to clean, with less irritation.

Categories: Uncategorized | 5 Comments

Congratulations to Aunt Dana and Uncle Nick!

photo by Elizabeth Dickerson

photo by Nathalie Moussi(lifted from FB) 😉

More photos of the whole trip to be posted.

 

Categories: Uncategorized | 1 Comment

Wash your hands, please!

To all those people we’re so happy to see, please endure my request: WASH YOUR HANDS!

Now normally you know me as the anti-anti-germ girl…more of the kind to promote licking the glass of a MARTA train to build self-immunity…but with Beanie’s case, I have to insist otherwise.

To be honest, Elie’s not that big on being held without pillow support anyway. Her sweet ragdollness (that makes me want to carry her around like a stuffed bunny) must make it uncomfortable for her. So anyway she won’t be offended if you just say hello without a hug.

I’ll have hand sanitizer if you need it. So forgive me asking and reasking, it’s not personal, you stinky people! 😉

(also she throws a bit of a hissy around perfumey or smokey scented friends… So if she cries, she’s not saying she doesn’t like you!)

20120515-122914.jpg

Categories: Uncategorized | 1 Comment

Best Mommy EVER!

20120513-091629.jpg

Categories: Uncategorized | 10 Comments

Do you have those baby booties in a size 7?

20120510-212738.jpg
Photo credit: Khristie Power

Categories: Uncategorized | 5 Comments

Hello Dangley Friends

Beanie says good morning to much missed Miss Chandelier and her dangle gang.

20120510-091216.jpg

Categories: Uncategorized | 8 Comments

Create a free website or blog at WordPress.com.