Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Thursday, October 20, 2011



First "after" pic.  Still needing a little O2.

Resting up.

Just got home this afternoon from Portland.  Joel's surgery went amazing.  His doctor, Charles Bock, even came into an unexpected challenge, and did the correct thing interventionally, that prevented us from having to go in for an additional surgery later on.  We were super pleased with the bedside manor of all parties.  His eyes are parallel!  They are red/bloody, so I won't be posting any pics until they're healed up, (they look pretty bad.)  He's starting to act more like himself, and today on the way home, he ate some McDonald's french fries. :)

Thanks for all of the prayers and good thoughts, and wonderful encouragement!  I don't know what we'd do without all of you.  XO

Thursday, October 13, 2011

Perfect Sense

I've been agonizing over Joel's feeding issues since he started eating.  We beat the odds in the hospital.  We beat the odds and got his trach out in March, when they said it wouldn't happen.  We got a g-tube by our goal date.  I push and push, and we work so hard to get to our goals, because knowing that I have a kid that beats odds, there are no limits for us.  Everything is fair game.  Joel's calorie intake literally has me up in the night's making me crazy. 
I called my friend the other night.  She lives in Spokane, and has a 17 month old.  She's also a physician, and it's so nice to be able to talk to her on a level that most people don't understand.  But she's also a mom.  A great mom.  And I talked with her for over an hour, crying about feeds.  Crying about what we may not know.  Wondering if I've been in denial during parts of this.  (To backtrack a bit, someone told me that feeding tubes typically come out near kindergarten.  KINDERGARTEN.  This added to my obsession with making goals.  Beating odds.  My child is not going to Kindergarten with a feeding tube.)  She helped so much.  When we compared the two kids, Joel sounded more and more like a typical child.  I know I go over this over and over....wondering if he's ok, developmentally...  Her daughter ate tartar sauce for dinner that night.  Just tartar sauce.  DUH.  Because she's a toddler.  Just like Joel.  They're meant to be difficult and have a gap in communication with us, that's where they're at. 
After hanging up with her, I went through some of J's old pictures.  Looked at where we've come from.  Where the other kids were too....we've gone through so much, come so far.  This is a victory even when it doesn't seem like it.  I got my thankful back.
This week Joel has:  Pointed to three body parts- feet, eyes, nose.  Learned new words: Thank you.  I love you.  Bathtub.  Bye Bye.  Please.  Walked three steps from mommy to daddy.  Tried putting shoes on his feet.  :)  It was a great week.

Saturday, October 1, 2011

A Frustrating Perspective.

Imagine this:

Fix someone food 4 to 5 times a day.  Different foods from what everyone else in the family eats.  Special foods.  Interesting foods.  Expensive foods.  Foods that are easy to swallow.  Tasty foods that may spark a toddler's senses.

And then on top of that, you have to worry about calories.  You count how many calories are in each tablespoon of butter (100,) or in 2 tablespoons of peanut butter (190,) and you try to calculate how many calories are actually taken in....because if he doesn't eat enough calories, you're going to have to push food through the tube in his belly.

And then the little precious that you fix the food for- doesn't eat.  Not one bite.

Repeat this.  A billion times.  And then wonder how this tube is ever going to come out.


It's a typical Saturday morning at our house.  Mia's up to the bar, naked, watching cartoons with food all over her face......Connor's there too, tattling on her for getting into the truffles on the counter.  Jojo's in bed with Adam, after being up in the middle of the night for some odd reason.  He was saying "HIIIII  HI HI HI HI PAPA PAPA PAPA...." for about 15 minutes at 4am before being coaxed back to sleep.   It was so cute hearing him, even though I was half awake.  I need to make coffee.

Adam's been interviewing for a job at the bank.  It sort of fell in our lap.  We weren't looking for a job for him.  The plan was for him to go to school.  It was his first week, and he's been stressing about Spanish, and then BAM.  He gets an interview.  And next week he has interview #2 and #3.  And by the end of next week, we find out if we get to live in an apartment, or a house.  I'm praying for a house.  This job feels right.  Like SO right, like finding a puzzle to Adam's puzzle piece.  I can't imagine them not offering him the position.  We found a house yesterday off a craigslist ad, and put a few dollars down for an application fee.  They know it's pending the job which we'll find out about before next Friday, but we want to reserve it in case.  It's an older home, remodeled, near our church (that I'm hoping to attend again soon,....) and it has everything we need.  We can't raise chickens there, but I'm ok with that.  There's room for the trampoline, and there's actually an outbuilding/shed that is pretty perfect for my pottery studio.  I'm thrilled.  Adam's acting his usual non-emotional self....  Everything seems to be on the line, but really it's not.  We came here for Adam to get back in school, and to be near our family, which we are.  I wish I had a picture to share, but I don't.  Please pray for this fabulous stuff to come into fruition!  PAH-LEEEZE!