It's a tough one. No, she's not the only one who has to take all this medicine...but she IS the only one she knows who does. She's the only one in her class who has to go to the nurse to get an inhaler at lunch time.
On a positive note, my parents finally really GET IT. They are taking the girls for a week this summer, and made some plans expressly because of Mariella's lung issues. It's a far cry from 2 years ago, when my father called and said "she hasn't needed her inhalers at ALL, but we're going hiking and I can't remember which one we need to bring with us." He didn't get that the controller inhalers needed to be used every day, even if she was fine.
I'm pretty sure I have the only child in the world who gets excited over durable medical equipment. Our PARI Trek was delivered yesterday, so I had it plugged in, charging, when they got home from school. Mariella asked what it was, and when I told her, she said, "Gee, I'm breathing pretty good right now...but MAN, I want to try THAT!" I can't wait to see what she says about the pulse oximeter.
All is quiet, for now. She was a little junky earlier this evening, but she did her airway clearance, and got a good cough going, and it really moved stuff around. I didn't grab my stethoscope to take a listen, but the cough was really wet. I'm hoping that it's not a good flare starting, and just some junk...but, as always, we're keeping a close eye on her.
6 comments:
Aw, poor girl. I wish she didn't need all that medicine, and that she didn't have to get excited over the Trek but, I'm glad she has it. [And I know I'd be excited over the Trek].
Oh and there's another reason I should come stay at your house; she and I could do inhalers together.
I hope she's not starting up a flare and that she feels better soon.
It's tough, when you're six, to be different from "everyone"
We babysat for my friend's son, who has CF...and he was a little shocked at how much medicine Mariella took at bedtime. He asked if she did all that EVERY NIGHT, and EVERY MORNING.
I'm teaching her the phrase..."It is what it is" it gets me through...and I'm sure it will help her too.
Sara, maybe when Mariella gets older, she would benefit from an asthma summer camp. That way she could meet other kids in the same situation as her.
I'm kinda lucky in that one of my friends has bad asthma, too. He's I look up to a great deal, since he's in the same boat as I am with regard to lung troubles - nasty uncontrolled asthma with frequent flares - and he's still managed his black belt in martial arts, which is what I'm aiming for right now. So, every time I start wondering if what I want to do can be done, I can look at him, since he's done it.
But it makes a huge difference to know that someone else is in the same boat as you are... it really helps to keep you from being too isolated.
I'm thankful that I didn't have to grow up with asthma, but I know what you mean about taking tons of meds. My mom takes a good amount, and now I've started taking a ton too... except mine are all somehow related to my asthma.
I know some people who are shocked and think I'm crazy to be taking all that I am, but I've gotten used to it and it doesn't seem crazy to me... at least not too crazy. There definitely are times though when I wish I didn't have to take any of it and could just forget about it all.
I'd get excited over the Trek too. And honestly, I'm kind of excited for her that you got it. I've been wanting one for a few weeks. I got really excited when I got my PURPLE Advair the other day. :P
"I can't wait to see what she says about the pulse oximeter."
Asthma parenting can be bizarre, can't it?
Her meds regimen really does stink, but I'm happy she's happy about the portable neb.
And hooray! For grandparents that get it. We've fought that particular battle, too--I know how relieved you must be.
Hey, I get excited over stuff too sometimes! I have a whole bunch of asthma "souveniers" - printouts from lung function tests, the mask from the last time I went in to get nebbed (I rarely need it and don't have my own.), my nametag from an asthma conference I went to...
Post a Comment