Wednesday, June 1, 2011

Lots Going On

Okay, so there's been a lot going on lately, although not so much with Aaron as with everyone else.  But the most important news is:  Aaron is almost 1!!  We're celebrating with an open house on his birthday, Monday June 13th, from 5:30-8 pm.  If he has touched your life, you are certainly invited.  It will be fairly low-key, but we can't wait to see people.  Please drop by and say "hi" and see our little miracle.  I would love to be able to get a rough head count, but don't let that stop you from coming if you don't get around to telling me.

Probably my favorite part of this (other than it's his birthday!) are the two logos in the bottom corner.  A dear T18 friend made them.  The one on the left says, "Angels made with 47 pieces" and the one on the right is "Love doesn't count Chromosomes."  She graciously gave me permission to use them on here.  

Anyway, Aaron has been doing fabulous on his continuous feeding schedule.  He really seems to like it. I have been trying to move him back to his other schedule over the last week or so, but today decided that I'm going to wait until after his pH study, which is next Wednesday.  He has to come off his reflux meds on Saturday before, and as I've gotten close to what we were doing before, he's gotten a bit squirrelly again.  And it's not like he doesn't already have several cords & tubes he's basically tethered to.

We stopped by big brother, Joseph's baseball game last week for a little while.  We got there in time to watch him come home to score.  His team is currently in 1st place in their division.  We tried to go again last night, but Aaron was having more trouble processing his oxygen, so we came home early.  BUT on the way home, a car pulled over and his NICU buddy from last year was in it.  Lots of fun to see him and his mom again.  This little guy was a 27 week preemie (I think) and TINY.  You'd never know it now to look at him.  He looks so great!  On the way home, the cottonwood seeds were blowing.  They look very much like fluffy snowflakes.  Michael is sure they are cotton candy seeds.  He is so cute jumping up to get them!

Today was Andrew's friend birthday party, which isn't really about Aaron, but he contributed to it.  It was a water party and the favorite water toy turned out to be my 60 ml syringes.  They were more popular than any of the water guns.  They fill up fast, and empty well!

Kind of a fun new development has been the formation of a new foundation to help trisomy parents.  It's called Trisomy Advocacy Group, or TAG as in TAG you're it.  This has been and continues to be an interesting journey.  One I never dreamed I would take.  It has some incredible highs, but also some devastating lows.  This group is dedicated to helping parents find the doctors and resources to help their babies as much as they want to.  I am the Utah contact for the group and am so grateful to be able to help.  The website is still being built, but it's address is

The last few weeks have been emotionally difficult as two moms I've been in close contact with lost their little girls.  Then the day after the second one passed, a mom-to-be that I've just recently been in touch with lost her baby.  BUT, I have also had the joy of being close to so many, both with living children and with angels, who have enriched my life immeasurably.  And I never really noticed when my children would put together cause/effect.  Aaron has done so recently.  He doesn't have the dexterity to reach over and touch the buttons on his mobile with great control, but he will bat at it over and over until he hits a button and starts his toys and music.  Then he stops trying to hit it and starts hitting his toys.  I love watching and noticing these milestones.   The other night, we were in the middle of yet another rainstorm and I noticed a beautiful rainbow out the front window.  It was dark both above and beneath, but in between, the most beautiful colors.  I am grateful for the rain that brings such beauty in my life.

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