Monday, June 5, 2017

Living Life

Aaron made it home on Thursday.  Between steroids, restarting his diuretic (don't get me started on that one), and simple Tincture of Time, he decided that breathing was an okay activity again.  And because the one thing we know we don't know is how much time we get with this little man, we needed to make some more memories.

So on Friday, we loaded up the big van and took everyone who was available to the zoo for Dream Nights.  We've been every year since Aaron was born and as always, it's a lot of fun.  For one night, the zoo hosts families whose children are chronically ill or have special needs.

There's dinner, face painting, characters, animals (duh) and lots of other families who fight the same battles day in and day out.

Aaron had a great time!  He was a giraffe this year.  Andrew dubbed him "Jeff, the Jaff," and claimed "Puff, the Wuff" (he was a wolf) for himself.  So he's been an orange tiger (twice), a dragon, a bear, a white tiger (I think) and then the giraffe.  His first year I opted out of doing the face paint.  Still too skittish.
Waving to the lions.

It was quite the feat getting ready to go though.  This is an "off" month, meaning we don't have to do two of his inhaled meds, so that part was easier.  He ate while we ate, and I gave him his meds, except the one I managed to forget in spite of all my planning.  Then while we waited in line for face painting, we did his inhaled medications.  All in all, I took up 12 different medications, 3 inhalers and 8 syringes pre-filled.  Yep, and that's a simple three-hour trip.  Gah...

That handsome Sousa player is mine.
Saturday morning brought a challenge.  Joseph marches with the high school and had a parade.  Who doesn't like a good hometown parade?  Local businesses, schools, candy, fun times!

Except while I managed to keep him "with me" during the sirens, there was also a military vehicle that was shooting blanks in addition to it's siren.  That was too much.  Last year the noise scared him and he cried.

Waiting for the parade to start.

This year he seized.  Seven minutes is a very, very, VERY long time to try to help your child.  I knew that EMS was right around the corner, but while his heart rate shot up and his sats went down, they were still within manageable limits.  And frankly, they would have transported him to the hospital, he would have been given some meds if he hadn't stopped by then, and they would have told us to follow up with his doctor.  We've already got an appointment with Comprehensive Care in another ten days, so really, 911 wouldn't have made much difference at that point.  (Although past ten minutes I would have enlisted help.  He just squeaked by.)

My cute tree hugger.

Saturday evening we had another picnic just a few miles down the road.  Michael thought the huge trees were incredible, and when we got home, Andrew decided to have some fun.

Aaron's big kids are just awesome!  I tell people Aaron has big brothers because they run with the wheelchair.  Mom doesn't even run without it.  He thought the spinning was the best thing ever!

And I'll put this out there in part because I use this blog to document and keep track of things.  Sunday night, Michael noticed that Aaron's pupils were uneven.  When he drew my attention to it, yeah, it was pretty obvious.  The right one was very small and non-reactive.  The thought is that it was residual from the seizure, or he had another one that we missed.  I'm afraid we're going to have to start chasing these things and try to figure them out.  I really, really don't want to deal with seizure meds.  There's not one out there that doesn't have ugly side effects.  But seizures in and of themselves are awful.  Just not something I want to think about.

And me?  Well, I've been trying to play catch-up on everything I was going to get done before he landed in the hospital.  I finally started making some onesies for Aaron.  He's about a size 7 and those things start at about $18 each for that size!  CRAZY!  I made him the floppy hat he wore at the parade.  The boys are creating their cowboy hats for trek coming up.  We got some vegetables and flowers planted, and are hoping the deer are willing to share the harvest with us.  I'm trying to get some kind of summer schedule put together for the kids here at home, and today I get to make an ice cream cake for Andrew, since he was supposed to have a birthday party last week, but yep, we were in the hospital.  At least it's only a week late, right?

So we're living life, sometimes sprinting, sometimes stumbling, as best we can.  A sweet friend put it so well when we were talking at the zoo.  She's lost two children, and a third is on hospice and not doing great, but he was there.  "If this is the last memory we get to make, at least it's a good one."  And we'll keep on making memories as long as we can.  

Memories are the treasures that we keep locked deep within the storehouse of our souls, to keep our hearts warm when we are lonely.
Becky Aligada


  1. You're my hero. That is all. God bless your family.

  2. You are so inspiring! Thank you for sharing so openly about your life, I'm sure I'm not the only one it helps. Curious, how do you get tickets to the zoo event? For next year, I have a special needs child as well. Thank you!

    1. I'm so glad you like this. There are several groups that are given tickets to distribute. Primary's and Shriner's get some, so does Hope in Utah, Mascot Miracle Foundation, and I'm pretty sure Angel Hands. There may be other groups, too.

  3. Thank you! Best wishes for your boy and your sweet family.