Smorgasbord

[Noonish:  edited to fix horrifying grammatical error. Yikes!]

~~~ We got the results of my girl's sleep study:  4.5 out of 5.  Which is apparently "significant," but not "severe."  The adenoids are nonetheless coming out.  I have to wonder what, say, a 4.72 would be - serious?  Does "serious" sound better or worse than "significant"?

They pointed out she never really got into a deep sleep (I KNOW.  I WAS THERE.  ALSO NOT SLEEPING) and if she did, they'd expect to see the sleep apnea to worsen.  At one point her blood oxygen got down to 89.  Last time it got down below 90, the pediatrician offered an ambulance to get us to the hospital for RSV.  Fabulous.

~~~ I've never joined F*cebook.  Every time I considered it, there'd be some spat of news about obnoxious privacy lapses.  Linkedin already creeps me out because they know my email address at work and track the other people who are already on there who've emailed me and then it sends me invites (hey! you might know *random plaintiff counsel* who emailed you that work thing?).  At least that seems to be how it works.  I assume *random plaintiff counsel* isn't actively trying to befriend me. 

My excuse was that I couldn't (nor shouldn't) access FB at work and my limited online time should be spent updating this here blog or reading yours.  Also because I enjoy complete sentences & there are no issues of my family bumping up against work people or my inlaws on my wall.  Not that I have any idea how it works, but it seems poised for confrontational worlds colliding. 

Except the people that pay me have bowed to the 21st century and are letting us on.  So am reconsidering. Again.  I know I'm the LAST person in the world not enrolled (enlisted?  entrapped?) so I don't expect anyone to tell me not to do it but still...  Google already knows so so so very much about me - who I email, what (& who!) I google, where I travel (Google maps!  Necessary since I've gotten lost in my own subdivision), turning all that over to a second company, especially a second company that only reluctantly lets you keep your status private, seems iffy.  Or I might be completely paranoid.  If I start lining the basement with lead and buying flats of canned goods, call someone.

~~~ We need to switch speech therapists.  There were scheduling issues and she was going to try to work something out but I haven't heard from her in 2 weeks.  That sucks. 

~~~ I have mixed feelings about the upcoming ABR (sedated hearing test).  One the one hand, if her non-verbal-ness is because of her hearing, and we can fix it?  Awesome.  Getting her to wear hearing aids?  BAHAHAHAHA.  Also?  It strikes me a bit as just ONE MORE THING.  One more set of specialists.  One more set of follows ups every year. One more possession to keep track of (we just went 16 rounds over a library book the school sent home with my girl.  Matt swore we never got it.  I found it months later under a seat in his car).

But if it's not hearing loss, then the not-talking is developmental and... that just sucks too.  She communicates, through signs (lots of signs!), pointing, and pushing/pulling you over to where she wants you but has also taken to yelling if something is not as she pleases.  And that is not good for mommy's equilibrium.  Girl has a set of lungs on her and she's loud.  It also makes me a little sad, that she's so frustrated with her limited communication she's taken to yelling.

~~~ I've dropped off my boulder-dash daily but here are two from this weekend:  Finally breaking out the "build a pulley/crane" set from Christmas and putting it together for with my son.  Made myself put down my book and actually BE there with him.  Well worth the sore fingers from those obnoxious tiny pieces.  Especially since he's still running all over the house looking for things to lift with his new crane. 

Two:  Because I care nothing for my son's nutritional needs, we did a fast food run.  He asked how french fries were made.  After a few more bites he thoughtfully agreed that he could almost taste the potatoes in them.

Fun Run at the NDSC Conference!

Last April my brother talked me into doing a half marathon with him.  I though that was an insane but needed a project so started running. I started by doing a mile.  One mile.  I ended up running three half-marathons last year, in June, September, and October.  I’m not fast, finish line videos prove I’m not graceful (my brother sent me a youtube video of a lumbering bear once, for comparison. Ah, family), and I’ve found that “runner’s high” to be annoyingly elusive.  Sometimes I have petulant little arguments with myself when debating if I should stop eating, get off the comfy couch, & put on my running shoes.  But at the end of the run, any run, I do feel terribly self-satisfied.  Smug even.  HA!  LOOK WHAT I JUST DID.  Take that couch-girl! 

At every race I saw other folks running as a team for various good causes, in matching T-shirts.  There was a girl with CP who ran a 5K with her dad and a guy in a wheelchair at the September race.  I thought it would exceedingly cool if *I* had a T-shirt extolling my favorite cause.  And if my knees hold out for a few more years, I look forward to running with my girl.  No limits.  With all the fervor of a new convert, I even emailed some of you, thinking we could find a race to run together, in fancy matching T-shirts, while in DC at the NDSC convention.  But then I got distracted by a sciatica-thingy, Thanksgiving, and back to back to back Winter Festivities.  Couch girl was winning.  And while I'm not quite back down to one mile, it's close.

But Carrie, who I met in September [which she still refers to as an "awful" race but she doesn’t seem to be holding it against me], sent me a fun bit of news:  Research Down Syndrome (RDS) now has a running program, including fun runs.  Perfect!  Motivation AND a good cause!  And what location would better to host a fun run then at the convention of thousands of families they're trying to help?

So I emailed both RDS and the NDSC convention, had a couple of lovely conversations with the powers that be, and we have a green light!  Details are still being hashed out but we're thinking Saturday morning, 7/21/12.  However, RDS needs to gauge the interest level and that's where YOU guys come in.  They're more than happy to sell a couple tech shirts so a few people can go for a short, color-coordinated jog, but if more than the 3 people I'm going to bully into signing up want to do this, then they need a permit, more T-shirts (we had a long conversation about cotton Ts versus tech shirts.  We're good.), cones, balloons, etc. 

I'm not going to extoll the benefits of running - if you run this one mile and sally forth from there, awesome.  If it's not your thing but you come walk with us, just to enjoy the people and morning, and to support the kids, more's the better.  This is just going to be FUN outing, probably from the hotel to the zoo through the park.  It shouldn't be too hot first thing in the morning and what better way to justify that extra muffin at breakfast then knowing you've already stretched your legs? 

Stock photo.  I don't know these people but don't they look HAPPY? 
Bet they had pancakes AND an extra muffin at breakfast.

So if you want to snag a shirt and hang with the cool kids, drop a line to rdsrunners@researchds.org and let them know this was the BEST idea you've ever heard of and can't wait to Race for the Extraordinary.  If you know people who know people, or if you're on FB or the message boards, that would be super fabulous too (since I'm too shy & uncool to join either).  The more runners, the more balloons, and the more muffins at breakfast.  No limits.