Life Starts Now.

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

Thursday, April 28, 2011


Wow.  I don't think I can sum up the last three weeks into a blog post.  Here's a (very quick-like) summary...

-Adam and I start talking about going back to school....which was pretty impossible with his income and our schedule, and large monthly payments.  Which started another talk.  About downsizing into a smaller home.  Which fueled another talk....why would we be moving if it wasn't moving us closer to Logan?  And another talk....we can pretty much move anywhere we want now that Joel's trach is out and appts are farther and farther apart....

-A few days later, after working on A's resume, and making some connections down South near my parents, the talk of school comes back up again....and Adam said he felt like we needed to prepare for this move to happen...wherever and whenever that may be.

-Two days later, out of the blue... Adam was 'let go' at work.  Just like that.

So, school is coming sooner than we planned.  We sold half of our home's furniture, our gas-guzzling POS suburban, packed up our things, and moved to Oregon.  Like that.  And that was three days ago.  Our lease on the house was "coincidentally" set to end at the end of May.

It's great I guess.  We're going in the direction we were wanting.  Furthering our education.  Doing whatever it is that we want to do in life.  And as hard as it was for me to let go of my beautiful furniture, and say goodbye to many of my favorite things, that's all that it was.  Stuff.  It means a lot to all of us to stick closer together to my parents.  Adam's dad is 74 years old....we're not sure how great his health is, and maybe it's about time we get a little closer to him as well. 

It's just not happening like I planned.  Go figure.  I didn't want to be temporarily living with my parents until financial aid and part time jobs get lined up, but that's how it worked out, and I'm incredibly thankful that my parents are able and willing to help us out in that way.

We're exhausted.  We moved a house, had a garage sale, and set up most of the changes that come along with moving and 9 days.  I didn't think that was humanly possible.  I continue to surprise myself.

Here are a couple of pictures of the kids from the past two days.  PS- We have sun.  Neener neener!

helping mama plant flowers

His new long as they're not all the way ripe...

Loving the outdoors! 

Nice socks, Connor :)


I forgot one thing....I miss you Washington people.  Terribly.

Sunday, April 17, 2011

Precious Moment #64558287346

Joel.  Looking out the window, playing with a toy, and doing new tricks with his tongue.  Making new sounds with his mouth.

I don't know how the tongue and trach correlate, but there's a difference there.  And he gets really excited to make new noises.  The tongue is the new "cool" thing of the week to play with.  I'm so happy for him. :)

Saturday, April 16, 2011

Am I the only one that thinks this is SO CUTE???

I understand.  Popcorn is my favorite too.  Can't wait for you to be able to snuggle on the couch and share a bowl with me.  Love you punkin'.

Friday, April 15, 2011

Holding My Breath. A Little.

Joel ate a strawberry the other day.  And then he ate yogurt yesterday.  And again today.  And tonight, he ate squash with oatmeal.  AND ALL OF WHICH didn't involve gagging/barfing.  AND he got in two bolus feeds today in his gastric.  Are we on to something here?  :)

A New Adventure

So we're moving.  To Medford, Oregon.  Where Adam and I began.  We had planned on this happening, but only recently, and not this way.  Adam lost his job yesterday.  Unplanned.  So it's now. 

But this is good in so many ways.  Our original desire was for us to FOLLOW OUR DREAMS.  We're young.  And life can change so fast.  I never wanted to be the mom of a fragile baby, but I am.  And now I have all of this knowledge, all of this stuff.  So that changes who I want to be.  What I want to do.  How I want to change my world.  How I want to change the lives of my children.  Our children.

We moved to Washington out of necessity.  The promotion came with a transfer.  And then there was Joel.  And nursing and appointments, and yada yada.  But that move to Washington didn't come easy.  We left a little boy behind.  And I'm so happy to know that our move will benefit him.  If there's no job here, and no emergent need to be here, then we need to keep our family together.  And our other half of our family lives in Myrtle Creek. 

Tuesday, April 12, 2011


#1:  Joel's eye appointment.  It was today, and it wasn't fun.  He cried the whole time, I'm assuming because he's teething, it interrupted his early nap time, and he realized that Dr. Baxtrom was trying to make him do work.  On the bright side, his acuities have improved again.  He's almost at 20/50, and a normal baby's vision isn't much better than that.  Our only focus now is to make sure to work that left eye muscles so that his brain will remember to use it, and continue getting that great vision.  !!!!  That is awesome news.  His two pairs of glasses were re-vamped a bit with his bi-nasals being increased on one eye, and we'll continue working on his eye exercises.  (Side Note:  A really enthusiastic grandma in the waiting room tried to pick Joel up without asking.  And then tickled him hard right where his feeding tube was.  And he didn't like it.  And neither did I.  I was a little shocked, but she did mention that her daughter was expecting, so maybe she was just excited to be around a baby.  Either way, for future reference people...don't touch a stranger's baby's hands without asking the child's mother first.  And if you know that a child is/was medically fragile, DON'T attempt to pick them up.  Say hello from a distance.  The majority of the people they see poke them with needles, take their blood pressure, and make them do things that are scary to them.  Greeting them from a distance reassures them that not everyone in life is a health care worker.)

#2:  Joel ate a strawberry today.  First food.  Ever.  I gave it to him because he was teething, and it was cold from the refrigerator.  Figured he'd bit into it, taste it, and be done.  Nope.  He loved it!  Glad to see it too, strawberries are my very favorite thing to eat.

#3:  Having a few GI issues.  Last week, we switched Joel to Vital Jr. at night.  The plus side to doing this is that it can hang for 12 hours at a time, meaning that Joel's feeding pump won't be beeping in the middle of the night, and I won't be running downstairs to refill it.  Also last week, Dr. Yuwono ordered a supository for Joel for constipation.   ALSO LAST WEEK, all of the kids got a stomach bug and had the 'hershey squirts'.... and here we are 7 days later....STILL changing clothes, bedding, and bathing Joel after every diaper.  Not fun.  I made the 'walk of shame' today, as I brought a stool sample to the lab, (gross!) and Joel's been on pedialyte only for the last 24 hours, and now we're up to 1/4th strength formula, and 1/2 strength tomorrow....and *sigh* Vital Jr. was discontinued until further notice.  Bummer....but I hope his tummy feels better soon.....I'm SO done with spray n' washing everything in our house!

Ok.  So there's little man's update. :)  Have a good night!

Thursday, April 7, 2011

Quit Clickin' the Damn Box

I have this issue.  It's with the health clinic nurses.  And the more appointments I go to, the more my irritation grows.  Here's the scene:  Inside the room, an intake nurse comes in.  She weighs, measures, and gets a sat reading on Joel.  She goes to her computer and runs down her "checklist."  "Do you have any pets in the home?  Does Joel see any therapies?  Do you have a wood stove in the home?  Does anyone smoke in the home?  And then there's this question:  "Is Joel considered to be delayed?"

Go for it.  Ask me.  Is Joel delayed?  Yes.  He is.  He's hitting half of his 9 month marks, and half of his 12 months.  Which, by me, is outstanding considering that at 4 months old, he couldn't hold his head up. 

But nurses skip over this question. The nurses that know us don't ask, and now even new nurses omit this question.  WHY?  Why aren't they asking us?  Are they assuming that we're still behind?  Are they assuming that because of his history he'll always be behind?  Are they just trying to save time?  Is this supposed to be a sensitive question?

Example:  A therapist (who we love very very very much) took a look at Joel's feet when he was standing and suggested that leg braces may be in order when he gets bigger.  He stands flat-footed, and she thought that needed correction.  Now granted, this is PT's job to correct misalignment, but no one looked over at me.  If you saw me walking, you'd notice that I'm near walking on my ankles.  My feet are TERRIBLY flat, and so are Connor and Mia's.  It was assumed that Joel's habit was because of his physical delay/in- coordination.  But it wasn't.  It was hereditary.

Now, I'm not rejecting the idea of the possibility of developmental delays with Joel in the future.  In fact, I'd say it's more likely statistically that we'll have them than not.  And if we do notice something, we'll cross that bridge when we come to it.  But I need the freedom to cross that bridge.  There's nothing that pisses me off more than an enabling relative of a disabled child, "Ohhh, we couldn't expect that because he's disabled."  Ok, that's a load of crap.  How about we expect greatness.  How about we expect for God's miracles to happen.  Expect for progress to be made.  Isn't Joel already showing enough proof of miracles?  Proof of progress?  Ask me if he's delayed!  Just freaking ask me.  Quit clicking that damn delayed box without asking me, because one day, VERY SOON, I'm going to be able to tell you "NO."

Tuesday, April 5, 2011


First day ever driving Joel alone.  3pm traffic, almost to Lakewood.  Busy.  Check my rear view mirror, Joel's dazed.  Look back at the road.  Drive more.  Look back again.  Joel's in the same position.  Not sleeping.  Not awake.  Not blinking.  I say his name to try and get his attention.  Nothing.  Say it again, "Joel."....still nothing.  This time, I yell, "JOEL!"  Nothing.  Reached behind my seat, grabbed his arm and shook it.  No blink, no budge.  Dodging traffic, I get from the fast lane to the shoulder in seconds, rip out of my seat belt.  Get out of car.  Open door.  Shake Joel while screaming his name....and he looks up at, "What, mom?"  I stood there, staring at him, hand capped over my mouth...loud all around us as cars and trucks and semi-trucks head Southbound.  Joel sits up, looks over at his sister.  Grabs a toy and claps it together with his hands.

We made it home tonight without any other incidents like this one.  I think I'm ready for bed now.  Looks like I may be making a phone call in the morning. 

Saturday, April 2, 2011


(I'm sorry for any men who may be reading this....)

It's PMS time.  Which means that I do my habit.  I curl up to the upstairs computer with a hot drink during naptime.  I read what Ewan's mommy and her friends have to say.  I read about CHD's and the families affected by them.  I get a huge lump in my throat when I realize just how many 1 in 100 is.  It's a lot.  One in a hundred isn't that rare.  We're one of them.  My heart hurts for mommies that have to wait to see their babies in Heaven.  My heart hurts knowing that someone's felt the same pain that I have, watching my child, wondering and hoping and praying that they'll make it through.

And when I hear my child babbling downstairs, it hurts my heart knowing that some mommies don't get to hear that.  Praying for CHD families today.