A Good Physical

October 26, 2017

Last Thursday of the 31 For 21 Challenge.  And Bradley has had a pretty good 24 hours.  When I took Sydney to the information meeting last night, turns out my little boy looked at Dad, then touched his chest and then signed and tried to say “go.”  I was ecstatic that he did it, happy for Dad that he got to be there to see it, and I admit to being a little bummed to have missed it myself.  But Dad misses stuff while he’s at work, so he deserved to witness something special first.  :-).

Bradley had his physical today.  My little guy is 46 and a 1/2 inches tall and 49 pounds, 15 ounces.  On his growth chart he is showing a really pretty and nicely aligned arc.  He’s still 10th percentile, which is hard for me to fathom if you really want to know.  I look at him in comparison to his peers in his class and I think he’s pretty big.  But then I see that him standing next to another kiddo that is  only older than him by a few months and realize he’s kind of tiny.  But in the grand scheme of all things Bradley, we’ll gladly take that growth from him.  Besides, he’s a really cute 46 1/2” and almost 50lb little guy.

He looks pretty good actually.  From his eyes, to his breath sounds, he looks really good.  We’re thrilled.  We know that there are other bridges to cross; but for today, this was a nice walk across this particular bridge.  Enough that Bradley’s doctor started talking about the future, telling me some of what will be coming along for him, from Guardianship to the ever present fear that the trigger in his brain will flip and he will fall into dementia or even Alzheimer’s.  Yes, my son already has a predisposition in his brain towards developing early onset Dementia and Alzheimer’s.

So I have been reading up on Alzheimer’s and I have been reading up on the research that has been happening.  I know that there are proteins in the brain that are scrubbers and if they stop scrubbing, then there is buildup of plaque and that’s where the Alzheimer’s starts (in the most layman, or layman’s terms!). How do they know this, by looking at the brain.  And by looking at the brains of those with an extra chromosome, they are able to glean an amazing amount of information.  Truth be told, the amount of information is actually proving incredibly useful for researchers desperately looking for a cure for a disease that is stealing so many of those we love.  And those like my son are able to provide some answers.  Not sure a system that eradicates those with an extra chromosome is the correct move to make.  Knowledge is power, and without knowledge we are all lost...the moment we can figure out that we are all in this together the better the chances for all of us.

For today, it was surreal to sit and talk about my son in the future sense, my son in eleven years and the road we have to think about taking for him.  I always have his future in the back of my mind; but so much of the time, his present takes the lead and the worry.  Sometimes I spend considerable time worrying about his schooling and development to the point that I beat myself up a bit wondering at what I am or am not missing.  But then inevitably, something health related comes up and I have to let all of that go and focus on the moment and how to best get him through and to the next moment.  We knew that our life had changed the moment we were told that he had an extra chromosome and we knew that the way we relate to the world changed the moment they told us he had to have surgery to survive.  We changed how we live in order for us all to survive, one moment to the next.

But right now, we’re in live mode.  Live one day at a time...yes, day.  We have been down the road, we know what it is to live one breath to another, one minute to the next, one hour... day to day is a bit new for us, we’ve enjoyed our time here.  It’s something special to have the freedom to plan a bit and enjoy more sunlight away from the thunder.  We don’t know how long this will last, though this week’s retching episode was short and relatively tiny in comparison to last week’s, last week’s was really, really rough.

He has grown since last year, maybe not by a bunch, in weight.  But his height is showing a growth of really close to 4 inches in the past year.  As long as he doesn’t lose weight, then we know that we are winning this particular battle with his health, and for that I’m grateful.  For today; for right now, I get to spend a little time thinking about his tomorrow and trying to shape those images for myself.  It feels a little weird, but it’s all right, I’m pretty good with weird.

Night all!  Busy days lead to sleepy nights...too bad I can’t convince Bradley to sleep through the night!  Happy Thursday Night!