Tuesday, January 27, 2015

A proper blog...

Have you noticed this space has really turned into a photo dump?  I blame Facebook.  With Max's Facebook page, I can quickly post about the ins and outs of his day.  And then I stitch them all together here for a blog post about once a week.

I don't know if that's a good or a bad thing. I just notice it's different.  I think for the most part, because Max has been doing so well, I don't have as many thoughts to spew here. Sure, I still have worries for him...plenty.  But, lately, they seem so trivial.  Like we have had two nurses give their notice and move on to other positions.  This will mean some shuffling and replacements to be trained, but I know it will happen eventually, and it doesn't really seem new-worthy for his blog.

He's not regularly visiting with his classmates this year.  Instead of getting all riled up about it, I'm taking it in stride...next year he's unlikely to be visiting over the internet with classes, because they will be in middle school.  His core group of friends are still around and we see them when they feel well, and the weather is nice to get out.

We're trying to plan a visit to the NIH for the study for his metabolic disease.  I had one week sorted and then Steve got pulled into a meeting that week he can't get out of.  We will reschedule, and truly, when am I going to learn as soon as I make plans for travel, something will change?

A couple of Max's doctors have changed at the front of the year.  And while there was a lot more off the computer to get all of that sorted, we were reminded again and again that even when his doctors move on to other positions, or we move him off the care of one and on to another, he still has the BEST doctors in the world on his team.

We were very busy through the holidays with our Santa's Little Hackers event, and are already working out when the next events for 2015 will be.  Nothing like planning 11 months ahead to make you feel like the year is already flying by!!  We are so excited to provide more toys for disabled kids and adults next year.  We're learning a lot about having our won non-profit, but it's all good stuff.

Max is STILL getting over the flu.  He has a little annoying cough that hits him at night usually. We all can be heard saying "COUGH BIG!"...instead he likes the gurgle that happens and will play with it.   It's been a month since he had the flu and has finally gotten his energy back.  Although yesterday he thought he needed to sleep until 2:00pm!  Thankfully he has his g-tube and was able to eat and get medicine while he slept the day away.  We've been having unseasonably warm weather this week so we got him out for a walk in the sunshine to wake him up.  And he slept all night last night!

Max is still getting therapy every day of the week.  Some days he has therapy and school, but I try to pace the days so he doesn't get too worn out.  And on the weekends we try to get him out of the house when the weather is nice.

I'm taking a little break while Max's cleaner is here. Yes HE has his own cleaner who makes sure his room and space is dust and germ free, paid for by the Medicaid waiver he's on.  I usually take this time to run around and clean up my messes, because I don't know how to sit and relax while someone is cleaning my house.  But today, I thought I could try and knock out a blog post.  Looking back, I can see I've lost some of my writing mojo...but it is what it is.  I will try to update more here, even when it seems boring to me.

And, because no blog is complete without pictures of the dude...

Max smirking at his classmates reading him a book on the Loch Ness Monster. 

Max being involved in voting and decision making for Young Ameritown with his fellow 5th graders.  Max is an officer in the town, of course!

And a walk along the river while daddy popped into REI for a bit.  Max much preferred the walk outside to the busy store. 

1 comment:

Elizabeth said...

Thanks for the update. Glad Max is doing so well. Give him a hug for me. ;-)