Thursday, September 3, 2009


Aohdan having his favorite breakfast of oats & bacon. He loves hangin with Papa at the local truckstop:)

Posted by ShoZu

Monday, August 31, 2009

A wheelchair lift and modifications made to an old vehicle since we can only get something like this paid for once every 5 yrs or so. Thoughts? Feedback?
Trying to figure out our best option for a vehicle...we Have a van (an older one) that we can drive, but I'm not sure if that's our best bet to have...
Tonight was...interesting. 1ent to check on Ava and thank goodness I did, because her g port had been left open and her feeds had been draining into her bed.

Friday, August 21, 2009

She made a pee-uuuu tiful mess!

Well I know it has been way too long since I've written, and I promise to update more often, but I just HAD to share this story. And parents of typical kids probably wouldn't find this nearly as humorous as a parent of a 'special' child would (just a fair warning-lol) but this morning was a little crazy. So just to give you a little background, we've had a lot of hours lately not covered and, on top of that, I've been doing a lot of extra running and such getting ready to begin nursing school in September, AND I have not been sleeping well at night. Sooo, last night I was laying in bed WIDE AWAKE at 2:00am. I knew sleep was not coming soon, and I had a nuse coming to interview at 10am, and I had no nurse until noon, so I was on my own (and Ava has a lot of cares in the morning hours). So I'm laying in bed, staring at the ceiling, and decided to take 1/2 of a sleeping pill. Just to take the edge off right? Anyone who knows me knows that I don't take much of anything pill-wise, except vitamins. My body is sensitive to most everything. So I take my 1/2 of a sleeping pill (unisom I believe) and next thing I know my husband is kissing me on the forehead and trying to say good-bye. I am OUT OF IT ok? We sleep with a baby monitor in our room, so I can hear Ava's vent 'breathing' and [usually] wake up very easily. After Kenny left I listened for her vent sounds, and it sounded like she was still sleeping, so I went back to sleep also. This was at 730am. About 8:30am I hear her vent 'breathing' faster, which tells me she is probably waking up, but I just could not make myself get up, so I thought, "I'll just lay here for another 30 minutes or so... About 900am I here her vent breathing pretty fast, and now I hear her going, "hmmpf. Hmmmpf. HHHHHmmmmpf." I laugh to myself, because that's her way of saying, "Yo, I am awake and need some attention." So I get out of bed, but before going downstairs I brush my teeth, brush my hair, just generally take my time getting downstairs. Finally about 9:20 I head down the stairs. The site that greeted me when I walked into her room was just plain wrong...

She is a spastic quad, so she obviously doesn't move real well. Well not this morning! She was laying sideways in her bed, and she is long, so her toes are hanging out on one side, and her head is pushed up against the other side with her hair falling into her face and over her eyes. I smell it before I see it... She is covered from head to toe in Poo. And I mean SERIOUS Poo. It is bubbling out of her diaper on both sides, and it has formed a circle in her bed from where she laid in it then decided to turn in circles to get away from it. And she is wearing a brand new night gown. I actually stood there looking at her for a good 5 minutes deciding where to begin. So I put on gloves (LOL) and begin removing her clothes. At one point I contemplated cutting her nightgown off of her. Yes it was THAT bad. So I finally get her undressed and, by this time, she is laying with her head at the foot of the bed, with her feet elevated above her head. About this time, I hear the dog wining to be let out, so I left her there, ran to let the dog out, got sidetracked outting away scripts and I hear her go, "HHHHmmpf!" "Oh yeah, Ava's still got a poo mess." So I head back to her room, strip her naked, lay her on some clean chux pads (still wearing gloves) and grab her soiled clothes and chux pads and head to the trash can. I go ahead and give her a bath because she had pee and poo all up in her hair and everything. So I clean her up, lotion her up, put a clean diddy on her, and wrap her up in a towel and lay her in the chair in her room. Next thing I know I hear Aohdan calling, "Mommy, I want pancakes! Mommy I wanna watch the white puppy (BOLT), MOMMY!!" So I run and get my 3yo squared away. Once again i get sidetracked in the kitchen and hear Ava again go, "HHHHMMPF! I go into her room and, once again, she has wiggled out of her towel, pulled one side of her diaper off, and is laying sideways in the chair looking at me like, "Come on Mom, finish with me already!" So I kiss her on the forehead and explain that her bed is still full of poo and I need to change out her sheets before we can snuggle. "KNOCK KNOCK KNOCK!" The nurse interview has arrived. Really? Can I just get done with one project? Has anyone seen the movie 'Something to talk about' an older Julia Roberts movie? In the movie, Julia Roberts keeps getting forgetting about her daughter and leaving her places--Lol! That's how I felt. So I open the door and show the nurse interview into our home, and of course Ava's room is right there when you walk in. So the nurse looks around me and sees Ava (who now has here entire head hanging off the side of the chair looking at us) and goes, "And this must be Ava!" We really do try to have fun with things in our household, because when you're raising a special needs child you really have to have a sense of humor about things.

Monday, June 1, 2009

Aohdan Singing 'Jesus Loves Me'

This is our 3 Year old Son, Aohdan, singing 'Jesus Loves Me' for us at the family dinner table. He just started singing like this out the blue! It seems like just a few months ago I couldn't get him to concentrate long enough to sing 1 line of a song, let alone the whole thing. This video gets cut off at the very end, but he actually sings the entire Hymn...twice! Wait until I get him on video singing some of Cross Current's rockin songs *grinning*

Saturday, May 30, 2009

Aohdan saying the Pledge of Allegience!

Aohdan goes to the Hartford Library every tuesday and sees Aunt Pearl and Miss Faith with his babysitter. He has learned so many things during his time there, colors, shapes, songs, all kids of stuff. But [I feel bad saying this] I had NO IDEA he knew the entire Pledge of Allegience until one day he goes, "Mommy, put your hand over your heart..." and starts reciting the whole thing! It was sooooo cute and he was SO proud!