Archive for the 'grandparents' Category

It was a quiet weekend

We had a fabulous time away. Thankfully, Mariella was nice and clear the whole time. My parents said she didn’t cough at all…ABBY, however says she coughed a little, but not as much as a few days ago. I’m sure my parents didn’t want me to worry. Of course, I worried while we were away…but we had no cell service on the boat, so we couldn’t call, even if we wanted to. My parents had a number to call if they needed to get ahold of us…so I wasn’t too worried about it. They were told, “one of the girls falls off the swing and breaks their arm…don’t call. Mariella crashes and is in PICU on a vent…call…even if we can’t get home…I need to know that.”

Now that we’re home…it’s been fairly quiet. Mariella’s tummy is bugging her, but she’s either going to throw up, or she won’t. She would feel better if she DID…but I can understand that she doesn’t want to. I just hope the “gag cough” that she is doing doesn’t set off a flare. Sometimes, the cough sets off a flare. I’m dosing her with single hits of Xop every 8 hours or so, just so her lungs don’t start screaming.

The seasons are definitely changing. We always expect a good flare this time of year…I’m hoping that it doesn’t happen, but we have to be prepared. She has a pulmo appointment coming up in a couple of weeks too, so we’ll see how her lungs are really doing. For now, I’m enjoying the relative quiet.

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.)

A new record!

We made it one whole week with no need to neb in the middle of the night. However, the streak was broken last night.

Stupid me…I had gotten complacent. I didn’t move the upstairs neb machine back into her room, and I didn’t have meds in her room, ready…so, it wasn’t an easy “get up and do it in my sleep” kind of thing. I had to get the machine…and oops, I took that cup to our friends house, because it was clean, and the other one was waiting for the dishwasher…and crud, the meds are down stairs. So, by the time I was done with the treatment, I was WIDE awake.

On a “normal childhood” note…It’s SKI WEEK!!!! The girls and I are heading to my parents…A will go skiing with Grampy tomorrow…and we’ll head home. M will be spending the week with Grammy and Grampy in the mountains…and she’ll get some skiing in with them. She’s healthy-ish…so it should be a good trip. If nothing else, the extra week off of school will help her out. She’s finally over the sinus infection, and mostly clear. It should be an easy week for my parents. I wasn’t diagnosed with asthma until I was in high school, and it wasn’t as scary as M’s…but they really do well with it. Once I explained that the maintenance puffers are for every day, not just if you think she needs them. They are fabulous with med compliance, and aren’t scared to keep her.

Hopefully, I’ll have some pictures of them skiing to post next week.