Saturday, April 23, 2011

Making Good on Keeping Up

Here I am, keeping my vow to not be horribly neglectful of anyone kind enough to humor me by stopping by. (Don't go, I'll write! I promise)
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This week has been a mixed bag of sorts. J is still fighting off the nasty cold that decided to take up residence in his little lungs. After days of mildly consternated indecision, it became evident he wasn't going to clear it on his own, so I bit the bullet and called the clinic. Our nurse proved she's worth twice her weight in gold when she told me we could get his Bactrim on a $4 prescription program at Wal Mart. I'm pretty sure I actually heard angels singing and the clouds may or may not have opened & spilled brilliant beams of light into my kitchen as I hung up the phone & finished loading the dishwasher.

As of tonight, he's not giving up whether he's getting better or worse. The snot factory in his nose has seemingly ceased production, but the one in his lungs has only thickened up. He's feeling happier, but still tires easily. Today we did unbelievable amounts of CPT, poor child got whacked six ways from Tuesday and the rattles just wouldn't give. We even did several sessions in Trendelenburg Position, or Postural Drainage,, with only limited success. If the overnight treatments can't wallop some of the crap out of there, we'll be headed for steroids in the morning.

While I don't by any means relish the idea of the possibility of this bout of illness going from yuck to worse, I do think we will at the very least make it through the end of the month and into the promised land of Insured May without having to go you know where. And no, I'm not going to say it. I've learned my lesson about not being a superstitious blogger.



On to slightly more fabulous news- on Monday, Mike held down the fort at our pizza fundraiser while I attended the nomination dinner for the Family Advisory Council at our Hospital. I am more than delighted to say we were accepted, and have some incredible opportunities ahead of us. Of course, I won't blog about details, but we will have opportunities to be parent mentors for newly diagnosed families, engage in ambassadorships and speak publicly on behalf of the hospital, and have influence in policies & procedures. My heart is so grateful to be in the position to help families suddenly thrust into the world of CF. I'll certainly never forget the days after J's diagnosis, how unbelievably hard even the small things became as we tried to make sense of a world that would do this to our baby. To be able to offer a hand, and lend an ear to someone going through those moments, and possibly help them to feel less alone ...it's a serious privelege and responsibility. To be chosen as someone worth giving this responsibility to, in my eyes, is a great measure of success.

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