~~~ 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
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.
I finally succumbed to FB last summer. I sink too much time into it, but it has its merits.
ReplyDeleteKeeping hearing aids on a resistant young child is no picnic -- but the upside is that lots of people have fought this battle before you and can give you (sometimes helpful) advice. If it turns out she has a hearing loss, I strongly recommend you join the yahoo group listenup -- you'll get the dirt on how to deal with everything, as well as a lot of support. Or there may be a yahoo group specifically for DS + hearing loss, which might be even more helpful.
Anyway, one tip off the bat: You can get various devices for tethering the hearing aids to a clip on her clothes. It means she might be able to pull them out, but she can't get them into her mouth or lose them altogether.
THANK YOU! I suppose I over looked the easiest answer which would be she needs tubes & that'll magically fix everything but... yeah. Natural pessimist right here!
ReplyDeleteYep- I think that the best way to consider the ABR is rule out stuff. We had it too, it is really pretty routine. And FYI- your little gal is just 4 right? My daughter probably wasn't talking intelligibly, one word-2 words, until 6 - not unusual for DS kids at all. And my daughter has ear tubes and some mild hearing loss only in certain ranges which need no aides but do get her class an fm system and a front seat which most teachers just adore and help the teacher get heard better by everybody. Unfortunately, Kayli loves to sing but isn't too tuneful :). Singing along was one of the areas where she learned to speak words that she couldn't seem to put together herself. She speaks in sentences now and is mostly understood in certain contexts and in person. You'll see at the conference!
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