Wednesday, December 18, 2019

Not Just a Cold

Today is day two out of probably (hopefully only) three that Brady P. is home from school.  Sick.  With a cold.

How do I know it's just a cold?

Because I took him to see a medical professional yesterday.  After new parent trial and error, most parents don't take their kids in to the doctor when they think it's just a cold.  There's really nothing to do except keep them comfortable, keep them away from others and push the fluids.

But "just a cold" does not mean what it means for most kids what it means for Brady P. 

Monday night was another one of those scary nights.  I almost called 911. Several times.  But once I got little man calmed down enough, he could breathe better.  Yes, he was breathing.  That's vital.

Living 45 minutes to an hour away from an emergency room is a bit daunting when you wonder if your child is going to keep breathing through the night.  However, this isn't our first (or second or third or forth, etc.) time dealing with this.

With a little memory prodding from my mother the nurse, it finally clicked with me just what is going on with Brady P's breathing.

Please note that most kids with Down syndrome often have a thing or two or three that their parents have to deal with as extra medical conditions.

The two big ones we have dealt with Braeden are mostly resolved.  They continue to be on watch each year or two.

But now I have finally realized that this is Braeden's extra medical fret.

Not only is his entire body smaller than an average child his age (less than 1% on the growth chart), but so are most things inside him -- his airway being no exception.

So take his extremely small airway and shove a ventilator tube down it for two different surgeries before he was one year old.  Each time after the tube was removed, he had excess inflammation and gobs of mucus build-up.  I would bet there's a bit of scar tissue from all of that as well.

These days, even now that he's five, when he gets "just a cold," there is one night of no sleep, calming him down between gasps of air, wondering if I should call 911 and all the small child vocal expressions that go with it.

One night of that is one too many, thank you very much.  Here's where I finally got wise.

Little Brady P. needs special medical treatment at home during that time.  The albuterol nebulizer doesn't quite seem to cut it, so I went to see the doctor yesterday to get him a three day supply of prednisolone, a steroid that helps keep his airway open.  As my mom always said during these times, "You don't mess around with a little person's airway."

She's absolutely right.

I am going to hopefully get him an inhaler of some sort for the next time (and the next and the next) this happens, so I don't have to worry about calling 911 that first night.  Or strapping him into his carseat and navigating the winter roads at 2 in the morning myself.  Cuz the latter is a pretty bad idea for many reasons.

Hopefully, we've got it figured out!

So, that's what we're dealing with during each cold.  And let me tell you, school is amazing in most ways, but pretty brutal in this way.  Before we were just usually quarantined in our little house.

But this is life, and here we go.

We are making the best of it.

Here is him posing in front of the Dino puzzle we finished today.

Little poser

Well, here's to your health and wellness!  Be prepared, my friend!

Wednesday, December 11, 2019

Leaps and Bounds

Tuesday I walked into the schoolhouse to pick up wee man, and the teacher started gushing to me about how awesome Brady P. did writing and spelling that day.

"What happened over the weekend?"  Miss Jill asked.  "I mean, it's like leaps and bounds from Friday to Monday."

I didn't even know what to say.  I was just so proud.

His afternoon aid stood there smiling.  A big, blushing grin.

His morning aid sent me a picture of his work earlier in the day.

Lili's name!

His special ed coordinator was blown away too.

"He wrote all the students' names," Miss Jill continued.  "A couple times. And he even wrote mine and came up to me all proud to say 'look what I did!'"

I know he's doing awesome.  I do his homework with him.  I read books with him.  I watch him progress. 

But to see other people beam at the accomplishments of my son fills me not just with pride, but with gratitude.  I am so grateful that he is a student in that school.  Not just because he's progressing, but because everybody notices.  Everybody is impressed.  And everybody is so proud of him.

The fact that little Brady P. shows significant progress in the areas he is so far behind in because of his extra chromosome, really touches the people that work with him.  Because they genuinely care about him.

His progress is their heart hard at work.

It's like a sprinkling of magic pixie dust blew through the schoolhouse and tickled everybody to the bone that day.  It's one of those moments where you can take a step back and say, "Wow.  We're really making a difference here."

And it means so much.  To everyone involved.

So, thank you to everyone involved!  You know who you are.  I'm not going to embarrass you anymore than that.

Thank you for caring.  And thank you for feeling proud of your efforts through a little boy who's going to help change the world.  Because you are giving him the tools to help him change it.

Wednesday, December 4, 2019

It's Not About Me... or You

Guess who is back!

The cutest, sweetest little boy my world has ever known!

Nap time snuggles... irreplaceable!

Did I ever tell you that I never really wanted to have kids?  

Probably.  It wasn't my thing.

To most people, "having kids" would mean raising one or two "typical" children in a household with a mom and a dad.  And often, that mom and dad wanted kids.

Brady P. and I are not the norm!

Instead, I raise this little boy with an extra chromosome.  Extra indeed.  Me and him.  Him and me.  Unless we have family in town or an occasional sitter. 

I went from not wanting a child to that being my life!

Want to know that ironic part?

I love it!

I absolutely love hanging out with that little man (with the balance of school, of course!).  He is such a joy.  He's an extreme test of patience, psychology, energy and troubleshooting, but a joy nonetheless.

And that somewhat selfish woman that I used to be has totally transformed her purpose in life.  I have realized that my life is not even really about me.  None of our lives are really about ourselves.  They're about how we act and react toward others.  How we give of ourselves in order to help others thrive.

With that said, let me give a quick shout out to Brady P's grandparents: Grammy, Gramps, Nana and Grampy.  They have all, in their own way, gone above and beyond what I thought grandparents would ever desire to do for their grandkids.  I am amazed.  

Though it's not biologically likely, I may have a slim chance of being a grandma someday.  I promise to always give of myself for those little tykers if I get that chance.  Because, like I just said, that's what life is about.

That's the most fulfilling thing you can do for somebody else: help them in their time of need.

So through this whole cycle of, wow, now I have a kid, and wow, I really need help, and wow, look at how people step up to help, and wow, look how much love my child brings into this world, I'd say I'm a much different person.

Not just different, but better.  Purposeful and worthy.  Full of love and light to share.

This world isn't just about my career and what I want to do.  It's not about yours either.  It's about showing kindness and compassion toward others -- especially when times are tough.

That is really how we become better people.  It's how we learn and grow.  And it helps make this world a better place.

Thanks for doing your part!  What's next?