Archive for the 'compliance' Category

Argh…Parents just don’t understand!!!

M is HOME!!! I LOVE, LOVE, LOVE that my parents are willing to take her for the week, but I am sure glad to get her back when vacation is done.

According to M, Grammy and Grampy were compliant with meds…THAT’S good. She was told to Acapella at least every evening, especially on ski days. She told me that Grampy never gave her the Acapella. However, she IS six now, and should be asking for it, if I’ve told her she needs to.

According to THEM, she didn’t cough at all (I’m not sure I believe it) M said she was a little tight, but didn’t cough. She didn’t tell them because she was afraid they wouldn’t let her play.

The place they go has a great recreation room in the basement. Lots of open space, and it’s really good for running around. I did it when I was a kid, and I’m glad that my girls have been able to play there too. I WISH we had such a great place for her to run around and play.

I get so so so tired of my parents telling me how “great” she does when she is with them. It makes me feel like they think I’m making it all up. I have CT scans of the air pocketing in her lungs. I have X-Rays that show her occluded with mucus from top to bottom of her lungs. It was warm out, so no, her lungs weren’t going to rebel as hard as they might have if it had been freezing cold out. It was rainy and wet…not icy cold. It’s just so flipping frustrating.

My parents also need to learn that M, especially, will rat them out if they don’t tell the complete and honest truth. I KNOW that they did this not to worry me, but they told me that Mariella only “threw up the once” It’s not surprising, really…I’ve been waiting for a good blow for about 3 weeks. She has gone her longest ever without throwing up. M, however, told me she threw up “a couple times.” The jury is still out as to whether or not she TOLD anyone she threw up, or if she just took care of it herself. Two would be fairly normal, more than that, no. It will be curious to see if she flares now. It’s about 50/50, whether or not she flares after an episode.

I can’t believe my father forgot to bring his camera. No skiing pictures this year.

(and, about 25 minutes after I posted this, she started coughing. Somehow, I don’t believe she didn’t cough the whole time she was there. It’s a nice deep cough, not quite barky…so I’ll see where it goes.)