Wear Gray For Asthma Awareness

That's something you don't see. We've got "Go Red For Women" We've got "Wear Blue for Autism" We've got "Wear Green for Organ Donation" The ever popular "Wear Pink for Breast Cancer" I've never ever seen..."Wear gray for Asthma"

Of course...though I'm wearing my blue shirt today...I don't believe that it's raising awareness about anything. If I were wearing a shirt that SAID something about Autism...THEN I think I'd be raising awareness, but just a blue shirt...my husband is wearing a blue shirt right now, and I know it has nothing to do with Autism awareness. Unfortunately, we're all aware of Autism. We're aware of Breast Cancer. Asthma is one of the forgotten diseases. After all, it's "only asthma" I guess it doesn't matter that 11 Americans die every day from asthma and asthma related causes. How many people a day need to die for it to stop being "just" asthma? How many children, mothers, fathers, sisters, brothers need to die before people understand that it's not just a disease where you need a quick puffer, and you'll be fine.

I don't think I'm asking too much. Maybe we need to pick a day where we all wear gray. We can make a FaceBook event...that seemed to get a big response. Maybe May 4th...May is Asthma Awareness month...May 4th is World Asthma Day...maybe we should get something together.

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.

So not happy with my pharmacy

I called in a refill for Mariella's Pulmicort yesterday. It's her sick plan, so we don't need it all the time...I don't keep "extra" in the house...I have one box that we use till it's gone, and then I refill. I had 1 unit left, so I called in the refill. I went to pick it up, and the pharmacy didn't have it, AND never called to tell me they DIDN'T have it. ANNOYING.

THEN, I was cleaning the kitchen, which includes taking the meds that I've just thrown on the counter out of their boxes, putting the refill label on the inside of the cabinet, and stowing the meds in the proper person's (read...Mariella's) box. So, we had 2 new Xop's that I picked up a couple weeks ago, and I've just been lazy...they weren't in the way, so I didn't put them away. I opened the box and noticed that the expiration date was for April 2010! Really...NEXT MONTH? I know we go through them quickly, but not THAT quickly.

So, in addition to everything that I have to do to get ready to LEAVE tomorrow...I have to go to the pharmacy not ONCE but TWICE. If the guy gives me crap, I'll be pulling all our scripts from that pharmacy and moving them to another one. I have better things to do with my time than plat stupid games.

LOOOOOOONG night

I had planned to go to bed early. However, after Mariella asked for actual treatments, as opposed to just puffers, 3 times yesterday...I was pretty sure she was going to need them at night, too. It's worse to me, to go to sleep, only to be awoken at least twice to do treatments. So, I decided to stay up until the first treatment. Then I went to sleep. Only to be awoken 2 hours later to do another treatment...and another 2 hours later. Needless to say, we are both exhausted.

We woke up late, so there was no way to fit all the treatments in before the bus. (2 neb treatments, airway clearance, plus all the stuff we NORMALLY have to do) So I drove her in. I have a feeling we'll be driving in every day this week.

Hopefully, we get this flare under control before we leave on Friday morning.

CRAP!!!!

As in "crapping out" Mariella just finished her 4th rescue treatment in 24 hours...I guess I can be happy she didn't WAKE UP in the middle of the night needing a treatment...but the fact that she needed one before bed, one this morning, her rescue puffer at school, and was asking for a treatment when she got home...basically, she's on Q4 again. Guess it's time to implement sick plan fully. Increased airway clearance didn't keep this one at bay. Should have known.

I'll also call Dr. D in the morning, just to make sure we don't want to be more aggressive. (since she's still coughing AFTER the neb.)

Why this week...REALLY...why? Couldn't I prepare for what SHOULD be a fun, relaxing long weekend without worrying about what might happen when we're away. I just want to cry. I KNOW my parents can handle it...I just hate that they are going to HAVE to handle it.

Probably only funny to ME!!!

I was babysitting for my friends son last night. He has Cystic Fibrosis...so we did his airway clearance. (Should have taken a picture of them sitting on the couch, each doing their acapella) and gave him his meds.

I tucked them all up to bed, he got his own room, with fresh sheets. (just to make sure there weren't any bacteria monsters hanging out there) and Abby and Mariella shared a room. I settled down on the first floor, to read.

I'm absorbed in my book when I hear a cough. My ears perked up...because I couldn't tell right off who it was. I heard it again...so I went to the stairs...still couldn't tell. So I went up, and thought I would ask D. (obviously, I SHOULD recognize my OWN kids cough...) The child looked at me like I was nuts...and actually told me that, "Um, SARA...my medicine makes it so I DON'T cough.."

So, of course...it was Mariella. I nearly brought her into my room...because I didn't want the cough to bother Abby...but Abby was insistent that they have a sleep-over. So I puffed her, and let it go.

We kind of laugh, when both the kiddo's are having trouble...if they are in the other room together, and there is coughing...we often hear..."That one's not ME" or "It's me...I'm ok"...or even better, when Abby comes in and says..."Jeez...they're BOTH coughing like CRAZY!"

And here we go again....

Yesterday...4pm...little bit of a runny nose.
Yesterday...8pm...didn't like what I heard in her lungs (gave her Xop)
Today....7:30am...started airway clearance.

I'm a little nervous about what Mariella's going to sound like when she gets home. Her URI's run the same course every single time...and I can time it nearly to the hour. She is SO used to feeling a little tight, that it often doesn't register. Especially when I can HEAR that she's having a bit of trouble, or can see it...and I ask...Mariella always answers, "no, I'm not tight" and then she thinks about it, and realizes, that yeah...she IS tight.

It's all good, though. I've got the sick plan in place, ready to implement. Neb machines on both floors, with cups and meds all ready. I'm prepared this time.

On the ME front...I'm taking all next week off...so that I can get packed and get the girls all ready for us to be gone for 4 days. Of course, picture day is next week, and my mom is SO hair challenged...but it will be fine. I have vowed to relax on the cruise.