I don't even know what to say.

It's the holiday season.  And amidst the stress, and the gift buying and wrapping, planning,...all of that, there is the simple fact that I am still among a new crowd of people.  A crowd of people that may or may not still have their miracle babies with them this holiday season.  Some babies never make it to their first Christmas.  It might be a bit of post partum, or me just being emotional as I usually am, but it literally takes me by the throat when I address how this Christmas makes me feel.  While I hear of my normal friends talking about Christmas programs, or what they "got for christmas," I'm also reading of my internet/blog/heart mommy friends....friends who are learning to cope with one less stocking on the mantle.  Jesus saved my son.  We got to spend Christmas with all of our children at home.  Together.  I am blessed beyond measure.

Control Freak

I guess it was inevitable that this would happen.  Logan arrived for Christmas visit with a cold...me being the one with an overflowing plate, got sick.

Joel had his 3 month follow up with Cardiology this morning and, feeling like the walking dead, was forced to hand over an appointment to Adam.  I've never missed one of his appointments.....well, I've never missed one of his ANYTHING.  And it was torture.  Laying in bed while someone else was discussing my son's heart was absolute torture, but we all got through it.  And after they all got home, I realized that it was just as torturous for Adam to try and answer questions at one of Joel's dr. appointments. :)

The appointment went well!  His echo & EKG were both great.  He screamed his way through the ultrasound as usual, but other than that, they said everything was pretty normal.  We have him on a Holter monitor for the next 24 hours to record any abnormalities.  The arrythmias Joel has been having didn't show up in the tests, but that may be because of his increased sotalol dose. 

I guess that's all I can tell you.  I don't like being the one hearing second hand information.  It just seems like with a kid like Joel, there has to be at least 1 person who is there for everything.  One person who knows all of it.  That person needs to be me.....so I better get well soon.  Ni-nite!

Feedin' Birds

I read an essay about a mother who locked her kids out of the house during "snow-week" after being cooped-up in the house for 3 days straight.  It sounds abusive and terrible, but it was absolutely hilarious...if you  happen to read any of David Sedaris' work, this story is called "snow day."

Please note that I LOVE MY CHILDREN with every speck of my human heart.  Every speck.  And it's not snowing here, but I do live in Washington, and it rains most of the fall, winter, and spring.  I'm used to it, and most of the things I love to do are indoors anyway.

BUT....If I had the opportunity to have no kids or nurses for ONE DAY.  Just one day, this is what I would do:

1) Wake up at 8.  This is sleeping in for me.  Have a latte (we don't own an espresso machine...sigh, but IF I DID...) and a cream cheese danish for breakfast, and read my bible.  In peace.  No rush, no report to get, no kids to feed, no "Honey, could you...?"  Just silence, and the smell of good coffee, with the perfect view out my master bedroom window. 

2) Turn on my new Norah Jones cd and listen to all of the words without being interrupted.  In the bathtub.  ALONE in the bathtub. 

3)  Get back in bed and watch a movie in my jammies, and knit. 

4)  Go downstairs for lunch, not have to see anyone, get into the fridge and see that the refrigerator is pre-stocked for me to make a turkey sandwich just the way I like it.  Iced tea too.  Go back upstairs, restart my movie marathon, and eat my lunch in bed.

5)  Call an old friend.

6)  Take a nap without having to think about 'how many more minutes I have until I have to wake up.'

7) Paint my nails.

8)  Browse through a stationary store.

I know, it's pretty boring.  But I can't remember the last time I was alone for an entire day...(the hospital doesn't count.  I was bordering a mental breakdown...) I guess I'm just a little "cooped up," and the boys have been playing wii for two straight days, and everytime we seem to get out of the house I end up responsible for everyone getting out the door, and snacks, and packing extra underwear...and Joel...

Mommy needs a mommy-break.  In her own home. :)

Sermon Notes

I texted a friend this excerpt from a sermon I took notes on.  She couldn't forgive her mother for all the awful things she'd done to her as a child.

You change your mind and it begins to change your heart.  Keep changing your mind and God will change your heart.

Once again, my words have bitten me in the butt.  I know I need to keep my head up.  I know Joel is literally jumping milestones right now.  I know where we've been.  And I'm trying to change my attitude.  Trying to change my heart.

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

:)

Tis the season to be thankful.

I am overwhelmed with emotion tonight as I sit here and think of all I have to be thankful for.  It's been an amazing year.  I've met so many new people.  I've learned so many new things.  I've lived and I've loved to the fullest. 

I can't truly put into words how very thankful and grateful I am for each and every one of you. 

For all of the workers:  Thank you for doing your very best to save my son's life.  You have not only taken care of my baby, but you've taken care of us as a family.  Thank you for going above and beyond.  For calling in to check on Joel on your day off.  For treating my son with love and compassion, the way you would like your child to be treated.  It has been a very fragile 8 1/2 months for us, and somehow you all knew what we needed to hear, when we needed to hear it.  I love you.

For my friends and family:  I have taken far more than I've given the past year.  You've watched our kids when we were in the hospital.  You've brought over food, or gifts, or sent up care packages, visited me when I needed another fighting spirit in my corner.  YOU'VE PRAYED.  Each and everytime I posted something asking for prayer or support, I was flooded with encouragement.  And I thank you.  Even when I couldn't reply back to messages, or return calls or texts....(which I still can't do very well,) please understand that I read every word.  It means far more to me than I can even say.  I hope someday I can repay you.

For my savior:  Thank you.  Thank you for saving my son.  Thank you for turning such a horrible situation into one that I could absorb faith and knowledge from.  For the toolbox I needed to maintain a healthy marriage.  I've learned so much about your faithfulness and love for your children.  You were with us the whole time, you never abandoned us.  I love you.

Hope.

Our first opinion on Joel's eyes was just that.  An opinion.  He said that Joel's eye or eyes would eventually not work well, we could do surgery, but that may not help either, and it was neurological, which the neurologist disagreed....  It was frustrating.  And it made me feel up in a corner.  What good does it do for the patient if you have two doctors disagreeing with each other, but no one is actively trying to solve the problem but the parent...who knows nothing about the eye or the brain?

I was referred to Dr. Baxtrom by a mommy friend.  Her son goes there for vision therapy and has had miraculous results.  I had/have no doubt that my son needs all therapies.  He was sedated and on heavy narcotics for the first 3 months of his life.  If he needs major physical therapy and occupational therapy, why wouldn't he need help with his eyes as well? 
Baxtrom's opinion of Joel's eyes was much different than the first.  He discontinued the eye patches.  After a straight month of diligent patching, we'd seen zero improvement.  He said that he's actually seen negative progress after patching in a case like Joel's.  It wasn't that one eye was turning (strabismus, which is what the first doc said it was.)  The problem with Joel's eyes is that they aren't working together.  If an object appears in his right periferal vision, his left eye has a tendency to turn in anyway, and so his left eye is taking "lead" in a circumstance where the right eye should be turning outward to view the object, and vice-versa.  Does that make sense?
There's no reason to patch either eye.  They work fine on their own.  It's working together that they need help on, which can be done.  Did you hear me???  IT CAN BE DONE.  Dr. Baxtrom said he has every reason to believe Joel has the potential to have "normal" eyes.  No surgery.  Just special glasses, and extra practice with lateral tracking. 
So he's getting glasses :)  Green rubber glasses.  They'll get here in a couple of weeks, and the neat thing about them is that the inside of the lenses, (around the bridge of the nose) is hazy.  So, in the circumstance I mentioned earlier, when his left eye wants to take lead, it won't be able to, because it won't be able to see through the haze.  The right eye will be forced to do it's job. 

So there it is.  There's the news.  It was a great afternoon in Federal Way, and the clinic was by the mall....which we stopped and did a little shopping.  Early enough that there were no shoppers, we got to take Joel to a mall, safely, without the panic that someone would cough on him, or not be able to find a plug in with the holiday crowds.  And he saw Santa :)  I'll post a pic soon of that.  It was classic.