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Thursday, April 30, 2009

New Pics from Darmia, Auntie Donna and Uncle Shawn

We've had a really busy few weeks. Amelia is well. Still transitioning into school. She's been spiking these high fevers at night, I give her tylenol and breathing treatments and it's gone by morning and she's not showing any signs of being sick. Completely acting like herself and laughing at my silly songs and her cartoons. I spoke to Amelia's Pediatrician about it and we both agree it must be neurologically based. Lots of times kids with neurological disorders have trouble with the brain controlling the body's temperature. So that's been tough, because it means we're up all night and then she is sleepy for school. Also, her G-tube site is still a mess and I've been having to cuaterize it every other night, with silver nitrate sticks, which is horrific. I know the granulation tissue (the tissue that grows out of a g-tube site, trying to heal the "wound" which is the hole the g-tube is placed into) isn't supposed to have any nerve endings in it...it's a crock! Amelia screams and cries bloody murder. It's literally torture. The only thing that keeps me doing it is the knowledge that if I burn all this stuff off and clean up the site, I'll be able to stop doing it one day -- hopefully soon. She recovers pretty quickly tho if we turn the right cartoon on.

Speaking of which...our young miss has become extraordinarily finicky over which cartoon episode is put on for her. So funny and at times irritating. Nestor and I have gotten into arguments over this because I'll say "Enough! We're teaching her obnoxious habits, that she can get her own way every time she puts her hand in the air" (this pointing technique she's developed means "CHANGE IT NOW!!!!", subtle) whereas, Nestor feels like this is the only place in her life where she has any control and we should honor this small request; "she doesn't get to choose what kind of food to eat, which clothes to wear, where she wants to go or have the voice to make demands of us...so let her have this small concession if it makes her happy." sigh. I have to agree with this arguement. However, lets just state right now that after watching the first 2 seconds of what-used-to-be-her-favorite Backyardigans episode, it's not so easy to just keep putting on one after the other. We went thru 9 in a row the other night before she finally gave in and allowed us the viewing pleasure for about 15 minutes before raising her hand in the air to demand the next viewing choice. I'll tell ya...four letters, D-I-V-A.

Here are some pics that were sent by Amelia's Aunt Donna today. They're from Darmia's birthday party (a few weeks ago I posted about Amelia's fun time there) and from Amelia's spring break when we met up in central park with Aunt Donna, Uncle Shawn, Darmia, their friend, Alex with his newly adopted, 3 legged pooch, Alice.


Amelia and Mommy painting Tinkerbell at Darmia's birthday party

Amelia making friends, as Mommy finishes the project

Amelia napping next to Daddy, while Alex rubs Alice's belly

Daddy enjoying the day -- with a very fancy cup holder!

Uncle Shawn and Mommy listening intently to someone saying very important things!

Clearly, these photos were taken by Auntie Donna with help by her assistant, Darmia -- which is why they aren't featured. We promise to include them next time!

3 comments:

Connor's Mom said...

What a diva! She's so cute.

We haven't run into the granulation tissue problem yet-- hoping we'll manage to skip that. I'm sorry you and Amelia have to go through the trauma of putting the silver nitrate on-- it doesn't sound like a whole lot of fun.

~Jess

Jodi Cutler Del Dottore said...

I'll tell ya...four letters, D-I-V-A.
*Spectacular*
The "cup-holder" is hysterical
And
the photo of you and Amelia painting...priceless!
Love you,
Jodi

Carrie said...

You guys look great in all of your pictures... I have to agree with Nestor too. Although I know that inner argument you have with yourself... We go through the same thing. Good luck with the g-tube site. I hope the issues get solved quickly.
XOXOXO