Sunday, July 16, 2017

Sunday Morning Musings: Fire, Fun, and Challenges

As I sit here on a Sunday morning, helicopter blades echo their "whomp-whomp" against the mountains. The house is sealed up as much as we can, and there is a sign on the front door asking visitors to please go around to the back.

These two pictures were taken at the same time: top one from
my front lawn, bottom from my back yard.
Not opening the front door.
See, the mountain is burning.  Yes, our mountain.  Yes, again.  Halfway between where it burned five years ago  and three weeks ago.  While we hope it won't be quite as bad as the first one, it's definitely more than the second.  When I went into the garage this morning, I could smell the smoke in there, and outside it's more like when you're standing near the campfire, and the wind is blowing towards you.  Yeah, not so good for already sick lungs.

We're not in California, we're in Utah, so while the fire is pretty close, (last night's nurse could see the glow of flames through the blinds) we're not in danger from the flames.  But emergency asthma protocols are being implemented and this kid isn't leaving the house unless he has to.  Sigh...

Playing with Dad at the reunion.
July has been a bit challenging so far. It's been good with family reunions and all, but we've also had a really nasty stomach bug rolling through the house, and Aaron has never been one to want to be left out of the fun.  Fortunately, a stomach bug with a g-tube and nissen and diapers is much easier to deal with than it is with a typical child.  It's just the rest of us have had it, too.  No bueno.

Parades without scary noises are much more fun.
He did get to go out to the big parade on the 4th, and Daddy figured out how to stave off those awful noises that cause him so much trauma:  noise cancelling headphones.  And he kept them on!  Score!!

He's also been to the water park and pretty much just had a great time wherever he's been.  We head up to the hospital on Thursday evening for a slumber party (aka sleep study) to make sure his ventilator settings are where they should be.

Playing in his tent at the water park.
And that med we tried to stop?  Yeah, "tried" would be the important word.  It didn't work so well.  I figured we'd know better by the weekend, and oh boy, did we.  I ended up having to bag him a few times that Saturday and Sunday in addition to putting him on 12-15 liters more than once.  So he's now back on it.  We may try to change it out for another one, we may try one more time to take him off even slower than before.  But for now, until he's had both his sleep study and his heart cath in a few weeks, we're leaving things just as they are.  I need him to be status quo so that whatever the studies show, it's with him at his baseline, not with other systems messed up and playing with the numbers.

Fun times, huh?  At least this kid keeps smiling, and reminds me to keep smiling, too.  After all, isn't the joy what really matters?

“Very little is needed to make a happy life; 
it is all within yourself, in your way of thinking.” 
– Marcus Aurelius

Saturday, July 1, 2017

Summer Fun

Seven years apart.  He has GROWN!
Life has been busy, good, but busy.

Yesterday marked seven years since Aaron came home from the NICU.  Seven years.  Had I been able to look forward to today, I don't think I would have believed it.  But I remember how overwhelmingly grateful I was that he was able to come home, that we could bring him here, love him, make memories, feel his sweet spirit.  

Trying to "help" the tech.
He had his "all you can eat" appointment the day after his birthday.  Overall, the doctors are pleased with what is happening.  We discussed some different strategies regarding his asthma, maybe using an antibiotic that has an anti-inflammatory component instead of a steroid the next time he has a flare-up in conjunction with a cold.

They've discontinued his acid reflux med.  That one has me a bit concerned, but only a little bit.  The thought is that since he's doing so much better on his blended diet, and he's bigger, maybe he won't need it.  The med does a great job at reducing stomach acid, but not just in the stomach.  It reduces the acidity of the whole body, including the lungs.  Oh, yeah, those lungs.  One of his two biggest challenges (the other being his heart).  And a more acidic environment helps to deter those nasty bugs that love to live, grow and thrive, and make him sick.
Pool party at school!

This weekend should really show us if it will work.  We cut his dose in half for two weeks and then stopped it on Wednesday.  It usually takes three to four days after stopping for symptoms to really rev up.  So far, so good.  I'm not seeing anything different.  So yea for better lung health, and yea for one less medication!!

He has his cancer screenings, which came back completely negative.  We expected that, but still, when the radiologist came in to do a few of the pictures himself after seeing the initial ones, I was nervous.  Aaron thought the slimey stuff was ticklish, and really wanted to help.

Stretching in the sun.
Aaron is going to summer school twice a week.  For those who think that cuts to services really don't matter, can I just say, they do!  Two years ago, in preschool, he got a six-week extended school year, three times a week.  Last year it was twice a week for five weeks.  This year it is only twice a week for four weeks.  Eight days of summer school.  ALL of Aaron's therapies, you know, the ones that strengthen his body, teach him how to sit up, roll over, etc, are provided through the school.  So from the end of May until almost September, he'll get a grand total of SIX hours of ONE therapy (45 minute session, once a week), instead of 45 minutes two to three times a week, plus his other ones.  We do what we can at home, but I'm kinda shooting in the dark.  I don't have the skills and knowledge that his therapists do.

He also got a haircut.  We're working really hard on helping him hear better, which means wearing his hearing aid.  It's really cool!  But if anything, including hair, is touching it, there's feedback noise. My poor silly monkey.  He's really not too sure about those clippers.  But true to his nature, he bounces back pretty quick.  After a bath, he was "all better" and ready to play.

This next week will bring cousins, aunts and uncles, and grandmas and grandpa.  Lots of family, lots of fun.  Summer time:  easy schedules, lazy days, late nights.  Lots of memories.

Summer is like childhood.  It is full of warm memories and gone too soon.
Kellie Elimore