MID-WEEK UPDATE OF OUR THRILLING, EXCITING LIVES (not really, just an update)

Remember how I was all excited because Colby hadn't gotten sick from me? Yep, spoke a little too soon. Saturday morning I got up early, 6:30. My "plan" was to study from 6:30 to 7:30 for my upcoming pharmacy tech certification. Bleh. Peeked in on Colby. His heart rate was 122. Double bleh. That's about ooooooh, I don't know, 50 points higher than it should be if he's sleeping. Took his temp, 101.2. Super-dee-duper-dee. Time to kick in the "Colby is sick" protocol. Who needs sleep anyways? Was able to get him on an antibiotic later that afternoon (thank you, kind, on-call pulmonologist at Cincy Children's who listened to me and realized I knew what the flip I was talking about.) Back in the day if this had happened, Colby probably would have ended up in the hospital, no kidding. But I've learned to catch it early. That, along with his trach, have kept major hospitalizations at bay. Actually he's even been able to go to school this week, too, so we definitely caught it early.   

In other good Colby news, I got the results from his most recent DEXA scan.  We have improvement! The spine DEXA was -3.0, which is much improvement from last year's at

-4.1. (Normal ranges for a DEXA scan are +2 to -2 BTW.) The total body was also decreased from 

-3.6 to -2.6. So obviously the infusions are working. He's due for his next round in January or February. I'm really going to push Cincy to let us do them at home. Colby has had 3 rounds of infusions, and has had no adverse side effects. No way am I driving 2 hours away in the winter to a germy hospital just so Colby can get infusions. Hope they agree to do it, or it will have to wait until spring.  

Colby's school year continues to go very well. What a stud! They use his eye gaze considerably more 

in class compared to last year, and we (the nurses and I) also put it in front of him more here at home. He is doing a lot of exploring on eye gaze, discovering new words. We've been working on vocabulary builder, a program on the eye gaze that teaches him how to construct full thoughts/sentences. So he has a page devoted to body parts. That way he could say, "my head hurts" etc. Remember how I jokingly said we were in big trouble when he finds the word penis? Well guess what? He found it. In class the other day. His nurse sends me a text saying, "Colby just said 'penis, penis, burn' on his eye gaze." Really, Colby, really? You couldn't wait until you were home on the couch to say that? And you all wonder why I drink?! Actually I took this serious because he is on an antibiotic, which could have brought on a UTI. But once he did get home from school, he didn't say it anymore. Nothing else seems to be wrong. His urine isn't a funny color or doesn't have a strong odor. So for now I'm going to stick with he just found the word and wanted to say penis. Hey, he's 11, what do you expect?

Spent over 1.5 hours on the phone with Apria, Cigna and CareCentrix working to get the IPV issue cleared up. Apria says call Cigna. Cigna says call CareCentrix. CareCentrix says call Apria. Finally I reached someone with some sense and we (Apria claims rep, customer service from Cigna, and myself) had a conference call and worked it all out. Or at least I was told it's resolved and to just ignore the $1,519 invoice I received. That's right, little darlings. It's not my problem you all can't get your shit together, but please allow me to spend my precious time getting the issue worked out. My pleasure. You're welcome. Have a nice day. And oh yeah, screw you.

That wraps up my blog/update for now. I have some errands to run before Colby gets home from school. Gotta make hay while the sun shines you know. Bye for now.