Monday, September 12, 2011

15 Months Tomorrow!

Left - Aaron last week playing with some toys.
Right - Aaron one year ago in the same size corner chair.
He's grown so much!!
Aaron is doing really, really well!  It is so fun to watch him learn and grow.  Because he has low muscle tone, it's hard for him to support himself.  Last week in therapy, he actually managed to pull himself from a side lying/sitting position to upright!  This is a HUGE milestone.  It was so exciting!  He also is starting to put together cause/effect relationships and play with some of his toys.  One of his therapists brought him a new chair because he's outgrown the cut-outs on the old one.  He's learning to bang toys on his tray to make noise.  I know this may not seem like a good thing to a lot of parents, but it really is an important milestone.  I have never had to teach a child this before and so I missed out on the joy and excitement as they figure it out.  Waiting and watching for these milestones makes them that much more fun.

Aaron is also really enjoying his hearing aids.  They help him hear, but also provide new things to throw and chew on.  Yes, they're multi-purpose, but we try to keep getting them back in his ears.  It takes about 20 seconds after I put them in before they turn on.  It's so fun to watch as they do, because his eyes will get really big and you can see the wonder on his face as he hears all the new sounds around him.

Last Saturday, at the SOFT picnic, my pulse/ox monitor (measures amount of oxygen in his blood) decided to quit on me.  It was a different model than we'd had and the battery died after just one hour.  So when we got back to the car, I plugged it into the car charger.  Because it hadn't been working for about 2 hours, it wasn't on Aaron and was just dangling on the floor.  I thought all the Herbie enthusiasts might like to know that my van has a heart rate of 55 beats/minute and an oxygen saturation of 77%.  So maybe there is something to the idea that cars really are alive!  Of course, when I put it on Aaron, it read "System Failure."  They brought me a new one that night.

Aaron now has four teeth, one on top and three on the bottom.  He's going to have to give up a favorite way of being comforted now.  No way I'm going to be rubbing a bottom gum with three teeth in it.  They're sharp!

We've decided to go ahead with surgery for Aaron.  All along, the doctors keep saying, "He's not acting like he's supposed to with Trisomy 18."  Meaning, he's doing much, much better.  He's never had any trouble with anesthesia before and so we're hopeful that this may be a same-day procedure.  The doctors at Shriners have consulted with cardiology and his admitting team at Primarys (who are all very familiar with him) and the plan is to admit him after surgery with the option of going home same day if he does really well.  In fact, that's what they all expect, but want to play it on the safe side.  It's scheduled for Friday morning at 7:30.  Please keep him and his doctors in your prayers.

I was in Costco the other night and my cashier and a bagger were talking about working with another co-worker.  They were talking about her with a little bit of trepidation and I thought I heard something sad.  So I asked them point-blank about her.  Turns out her toddler was killed in an accident not too long ago.  My heart broke for her, and also a little bit for them.  As I left the parking lot, I realized what it was I wish I had said to them.  I would have told them, "Please, find out her son's name and use it.  You won't be reminding her that he died.  She will always know that.  You'll be letting her know that you remember he lived."

With cold and flu season approaching, we need to become more careful again with Aaron.  Already, we're experiencing an uptick in the colds that are in our home.  I'm sure they're coming from that incubator called "school."  Anyway, while we love to take Aaron out, and we really appreciate all the love and concern shown to him by others, it's time to curtail his exposure just a little bit.  I really hate having to tell people to stop touching him.  I don't want to offend them, but I want even more for him to be well.  Last year I made a blanket to go over the car seat with a picture of him and "Please don't touch, I'm fragile" on it.  This year, he wouldn't be so happy all covered up.  He wants to be able to see and look at everything.  So this morning, I used some software, one of those ad magnets that come on the phone book, some clear packing tape, and a hook from the hospital to make a tag for his stroller.  I think it turned out really cute!  Hoping it gets the message across without hurting anyone's feelings.

On a happy note, we finally celebrated Michael's 5th Birthday with his friends.  His birthday was last July but his party got derailed when Aaron had to go back in to have his lip redone.  Last year, on his 4th birthday, Aaron was in the hospital in heart failure.  I came home that evening to spend some time with him for a family party, and went back the next day.  Michael is such a wonderful big brother to Aaron.  He loves him so much and is so careful with him.  It would be so easy for him to resent him or feel put off by him, but he doesn't.  He just accepts him and prays for him daily.  I was reading some old Facebook status updates from a while ago.  One day, Michael asked me if Heavenly Father heard him when he prays for Aaron.  I assured him that, yes, He most certainly does.  And He probably hears Michael's prayers more than anyone else's.

1 comment:

  1. That corner chair is so neat! And very very exciting about Aaron's milestones. :) I will be praying about his surgery Friday. I really like the sign you made for his stroller - what a great idea.