Thursday, April 12, 2012

Guess What? Aaron is a Baby!

Chillin' on my way to
PCMC for a check-up.
I know babies and small children like to explore with their fingers.  And since their own body has plenty of little holes (ears, nose, mouth, etc) those fingers like to poke in there.  Well, I guess I never really thought about his trach stoma (the hole in his throat, you know) being one of those little holes.  But on Tuesday, when I was doing his twice monthly trach change, he decided to check it out.  Any idea how hard it is to put a trach in a stoma that a little someone is trying to put two index fingers in?  I didn't need two more hands to do his trach change as much as I needed two fewer!  But yeah, we were laughing about it.  You don't realize how grateful you are for those little, tiny, simple things, until you discover that you never expected to experience them.

Yesterday, Aaron went to trach/vent clinic for a check-up.  He's looking great!  He's 10.85 kg, or 23 lbs 14 oz.  He's essentially the same size as all his siblings at this age.  AND he's been tentatively cleared to travel this summer to see family.  All his doctors kind of shrugged and said, "I don't see why not."  YEA!!!  Now, as far as getting off the vent, well, that one remains a mystery.  Kinda up to him and so far, he's not talking.

Waving

Aaron has reached a new milestone, but  unfortunately, he doesn't want to perform for the camera.  Last week, William was waving at him, opening and closing his fingers.  Aaron watched for a little while, and then started doing the same thing with his own hand.  This is doubly exciting as most kids with T18 struggle to open their hands.  We've been working on helping him open his since the day he was born.  He repeated it again on Sunday.  But since then, he kind of just give me his cute grin that says, "That's funny, Mom.  Keep doing it."  So I'll just have to keep trying to catch him at it.

Playing soccer

video

He also has a lot of fun kicking his soccer ball around the bottom of the crib.  I wonder how many other 22 month old kids are getting in all their touches on the ball on a daily basis.  Look out Real Salt Lake .  We may have your next superstar.

Avery Lynn and her bucket list

I recently found a new blog.  In fact, the blog itself is new.  Little five-month-old Avery Lynn was diagnosed last week with Spinal Muscular Atrophy, a degenerative disease that will probably take her life before she is 18 months old.

She has a bucket list of things she wants to accomplish before she goes.  It's got a lot of the things you might expect on there, such as learn to play an instrument, celebrate a birthday, meet Santa Claus, be on TV.

But then there are some others that you might not think of.  Mow the lawn, play barbies with her cousin, take out the trash with Daddy, get an allowance, hide from Mommy and Daddy when they come home from work.  Play in the mud, talk to Mommy and Daddy.  Throw a tantrum in the middle of a department store.

These ones, they're the ones that get me.  What kind of miracles do we get to participate in each day?  It's the little ones that grab you.  It's the little things we take for granted.  The smiles, the hugs, the silly times and the frustrating times.  That's what makes a life worth living.  I remember the many, many times I wished my toddler would be a bit quieter so I didn't have to take him or her out of a church meeting.  Do you have any idea what I would give to have an active, rambunctious, LOUD 22-month-old to take out now?  So celebrate those moments.  Those ordinary, wonderful, life-affirming moments. And hug your loved ones.

Happy 22 months tomorrow, little man.  You teach us so much.






1 comment:

  1. Norah has been battinhg at her trach stoma a bit lately too. I never thought of it like another little body part to fidget with, but you are totally right! And I can't tell you how often (constantly) I day dream of the little things I long to do with Norah if she was at home. But all-in-all, we are so fortunate to have our perfect sweet babies to fill our lives with such joy. xoxoxo

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