You may have seen the first video of Joel on his Passy-Muir.  It's a one-way valve, letting air come in through the trach, but only out the mouth.  He HATED it with a passion at first, but we've come a long way since then.  Here's a newer passy trial.

This is one of Joel's favorite things...SPINNING in his exersaucer :)

Well, hello there...

I'm up, doing my 6am routine.  I slept horrible last night, but I'm downing my cowboy coffee and trying not to be crabby....still, it's a little early to tell, the kids are still in bed... :)

I'm having a really hard time with Ricker's timeline.  I'll wait if God wants me to, but it might take me a while to get my attitude in check.  I know there are so many parents that never get to bring their babies home from the hospital.  Parents that have chronically ill children.  I should be so lucky to have a child with a temporary condition.....but the truth is, it's hard in my situation too.  We've been home for six months now.  6 months of people in our home 16 hours a day.  6 months of ordering supplies, 6 months of inhome therapies and appointments, 6 months of not being able to leave my house between the hours of 4-7pm....and we're only half way through.  "The only way out is through."  Ahhh, I love that quote.

To add to my frustrations, I've been having these dreams.....

Wonderful Dream #1:  *We're sitting in Ricker's office.  RN Denise and RN La Donna are with me.  We're taking out Joel's trach.  One of them is videotaping, and we're so happy that we're all laughing and crying.  And when they take out his trach, he cries, the most beautiful cry I've ever heard.  Different from the passy-muir sound....and I look.....and I can see the back of his neck, for the very first time.*  I'm crying right now thinking about it.....and I'm not sure if it's because I'm happy we'll get to that moment or sad that I'm forced to wait.

Wonderful Dream #2:  *More of a daydream....I sit in my room, looking over at the wall, thinking of how we'll incorporate a crib into our furniture placement.  What wall hangings from his room we'll bring in to ours.  How I'll (FINALLY) get to decorate our family room....what kind of a firepit ritual we'll do with a few of his medical supplies.  How I'll be able to check on him sleeping, just two feet away from me. 

Wonderful Dream #3:  This one's a daydream too.  Walking downstairs for a drink in my underwear.

So, we're off the vent for naps.  It's great news, and I can't for the life of me even pretend to be excited.  Dr. Ricker told me he won't take out Joel's trach until summer.  I had my heart set on March.

I feel like a piece of shit.  I should be happy.  My son's progressing so well.  He's come miles from where he was just 2 months ago.  This week he rolled over twice and ate his food....all of his food without puking.  Big deal for a kid who's had a tube in his throat his entire life.  But the truth is, I'm gasping for air at the thought that we'll have nursing for another 6 months.  That my family room will be my son's bedroom.  That I can't take a nap with him, or go to Chicago in April, or take him to the store by myself without having to have another person in the car.  THAT I CAN'T LEAVE THE HOUSE FOR ANOTHER 6 MONTHS WITHOUT AN EMERGENCY BAG.

It's like when you're running in a race, and you think you can't possibly make it to the finish line, you tell yourself these little 'mental motivations,' like, "just make it to the tree"  "just make it around that corner"  "you're almost there..."  Ok, that's what I've been telling myself for the past 9 months.

I'm feeling so selfish.  I can't see past the tip of my nose.  When is this going to get easier?

Another New Normal

Since coming home, Mia thinks she's really cute and funny to morph into "Baby Mia."  She grabs a binkie (she's never used a binkie) and a blanket, and gets into Joel's things.  I don't think it's necessarily a regression thing as much as a role playing, but either way, we humor her, and the nurses totally egg it on.  It's so funny.

Last night, she crawled into Joel's crib for the first time since it left her room.  She puts a binkie in her mouth, wraps a blanket around her, grabs an HME (Heat and Moisture Exchange) and says, "I need this for my suction."

It just dawned on me that Joel is the only baby she's ever been around. :)

Jo-Jo loves Robey

:)