Sunday, May 13, 2012

23 Months Today!

Birthday Boy!
Aaron is 23 months old today!  How's that for an awesome Mother's Day present?  Two years ago today I stopped going to all of my Sunday meetings because it was too hard to sit for three hours.  I was nearly the size of someone at term with twins.  My OB's comment, not mine.  And it was just hard to be out in public were people were asking when I was due, if I was excited, and even two who asked if I was pregnant.  (Yes, I had been eating cookies, no, not THAT many.) So it was a hard time, in so many ways.
May 2011

Last year this time, we were fighting off a bug at home.  The cool part was that was the first time he managed to not have to go into the hospital at all for this particular germ.  We had caught it early enough and he was strong enough that antibiotics at home did the trick.

Cuddling with his monkey.  This has become a real favorite!

 This week, Aaron has hit some new milestones.  You know, when you have a "normal" child, these things just kind of "happen".  When you have to work at them, it's a huge deal.

Trying to roll over.
This week, for the first time, Aaron lifted his head up off the blanket during tummy time.  It was only about an inch, and only for a few seconds, but he did it!  Then in therapy, he did it a few more times!!  This is a really big deal.

Along with lifting his head up, he's pulling himself back upright when his head drifts in his stander or when sitting on a lap.  He's engaging those core muscles in his trunk which will, in turn, help to strengthen his lungs and his endurance.

He's also trying to roll over.  He tosses back and forth and back and forth, but often has a hard time coordinating his hips, legs, and arms.  It looks like he's doing the twist in his bed.  He's my silly dancing boy.  But sometimes, he manages to get his right leg up and over and turn most of the way onto his tummy.  Then he giggles at himself.  He's so happy to be doing this. (The trach and circuit make it hard for him to make it all the way onto his tummy still.)

Yesterday, we also went out for a walk.  The weather was gorgeous and he hasn't been out much.  I think he really liked it.  I know I did.

Out for our walk.
He's still not back to his baseline oxygen usage.  Again today in church, I had to go out to the car and change out his oxygen tank.  And earlier this week, he had a big bump early one morning right as the nurse was getting ready to leave.  She had wiped his runny nose and I adjusted the ventilator circuit because it was pulling on his trach.  Our little prince decided he wasn't real happy with that one, and so he desatted.  Big time.  54% big time.  And sat there, not wanting to move.  And he was MAD!  And this smart mama, she had put the regular albuterol inhaler in a "safe" place.  Yeah, one of those kind of safe places, the kind where you can't find it.  In my defense, we had brought home a smaller one from the hospital that was sitting on his shelf.  Only problem was that when I primed it, it read 000 sprays left, oops.  Fortunately, his older brother has the exact same inhaler and knew exactly where his was.  So albuterol was given, his lungs opened up and were willing to receive oxygen again.  And his nurse was here for an extra half-hour helping me get him back to where he belonged.  I'm grateful for that.  It was easier with an extra pair of hands.  One time last year, he was struggling and his nurse simply said, "well, good luck," and walked out.  Yeah, she's not with us anymore.

So we're making progress towards where we need to be.  And we're making progress towards his 2nd birthday!  I've already had some people ask if we're going to celebrate again, and the answer is a definite YES!  So if you're reading this, if Aaron has touched your life, you're invited on his birthday, one month from today.  It really doesn't matter if you don't think you know us well enough.  If you want to come, you're welcome to celebrate with us.  Of course there will be more details later.  Happy 23 months, little man.  You have blessed our lives so much.

Just to be is a blessing. Just to live is holy.
Rabbi Abraham Heschel 


  1. Amazing little man! So blessed and watched over. ♥

    What a miracle our modern medicine is - and yes, I do mean miracle. Look at his little face, you can hardly see that he ever had a hare lip and cleft palate and what a gorgeous happy smile! Even with all his challenges, he faces it with a smile. He is LIVING his life, not just 'being here' like so many of us are. We could all take a lesson from little Aaron.

    Totally love the pic of him with his sunnies on, going for his walk.

    You know, I don't think many people could understand or appreciate just how much extra work a special child like Aaron is, nor how many heartwrenching hours and days you endure. You're right, each milestone he reaches is a big thing. HUGE in fact. ♥

    Thank you for your blog. I am learning so much and I'll bet others are too and it is going to make a wonderful journal in years to come.

    Thank you for inviting us to share this journey with you. ♥

    Love and prayers ALWAYS,

    Donna Bloedow (facebook)

  2. I'm so proud of you Aaron! What wonderful things you are accomplishing! You are truly blessed by God to reach that 23 month milestone. I'm praying for you to reach many more! :)