My life is going in a different direction...

And I  just started a new blog to work it out in writing. Feel free to join me on my journey.....

http://sunshineisastateofmind.blogspot.com/

2009 Phoenix Asthma Walk

As most of you know, we have been dealing with Piper's breathing issues and allergies since she was 6 weeks old. I was at a birthday party for one of the boy's friends and a NICU nurse I met there (at Chuck E. Cheese, of all places...) had me convinced that Piper had congestive heart failure because every time I fed her her bottle, she got congested and wheezy and had problems breathing. Thank God for that nurse that I rushed my baby into the doctor and we were given the first hint that Miss P had reactive airway problems. We went home with a nebulizer and medication and a lot of confusion and fear.

As far as genetic issues go, I realize that asthma is viewed as not being that bad. But, here's the real deal. She has severe, persistent asthma. Which, with the correct cocktail of meds, is in check and mostly tolerable. But when it's not in check, life around the Coe house totally sucks. Its hard to do ANYTHING when you can't breathe. She's missed 60+ days of school this year. And when she's healthy enough, letting her go off to school just totally, totally, TOTALLY sucks. We've suffered from misunderstanding and apathy from the peeps in charge there. In the last year, she's been in the hospital 4 times and I've watched her lay, unresponsive and struggling for every single breath, in the PICU. I was so scared she was going to die (which was a real possibility- it's a possibility that we live with every day.) And the biggest bummer is- there is no cure, no vaccine and no tried and true method of keeping it under control. We are still struggling to figure out why Piper's asthma is so severe and what we can do to mitigate the symptoms and flare-ups. So. Here's where YOU ALL can help. We (Piper's Crew) are walking in the 2009 Phoenix Asthma Walk to raise money for the American Lung Association- on Saturday, April 4th. We are walking because I want Piper to see a cure for asthma in her lifetime. I want her to know what it feels like to run across a room, un-medicated, and be able to breath. I want her to be able to live without the constant doses of steroids, which have severe and horrible side effects. And I want this for every other family that suffers because of this horrible disease. This will only happen if the big bucks keep rolling in for research AND education. (let's start with educating the poopers at her school.) Please consider joining us to walk- (but if that's not a possibility, a pledge would be most appreciated.) The path is a beautiful 5k (3.2 mile) walk along one of Scottsdale's most beautiful greenbelts. There will also be live music, a pancake breakfast, clowns (yikes!) and kids activities. We are getting matching tees made for our team (in YELLOW! Piper's fav color- what will YOU do for a free tee?!) so let me know when you register to walk what size tees you need. (And no, Toni, no tee just for pledging. So if you REALLY want one, you'll have to fly to Arizona) Here is our team page: http://www.mrsnv.com/evt/e01/team.jsp?id=2344&tid=573 You can create your own personal fund raising page after you register (feel free to use Piper's pic for your page) and I encourage you to PLEASE email this out to every one you know!!!! Our team name is Piper's Crew- Our goal is to raise $2000 for the American Lung Association. If we get 40 walkers and each walker gets at least $50 in pledges, we will EASILY make our goal. We only have 16 days until the walk - BUT I KNOW WE CAN DO IT! The Jaynes design group on ebay is also putting together a last minute group of benefit auctions to raise money for our team- if you are interested in listing something, please email me for details. jennycoe@cox.net

when having asthma doesn't seem so bad....

If you've followed my blog for any amount of time, you probably already know that Miss Piper's (and my) life is ruled by asthma. It is pervasive, like any genetic health problem, and one that is sometimes really craptastic to deal with. Case in point: This photo was taken by a dear friend on Christmas night. New dolly-check! New jammies-check! Meds every 2 hours so she can breathe and we won't have to visit an ER on Christmas night-double check! Asthma just never seems to take a day off, the damn bastard.....

I was delighted when my mom told me about this camp that she had heard about, specifically for kiddos with asthma. Aptly named, Camp Not-A-Wheeze. See, she would NEVER be able to attend a normal summer camp. Most kids with a serious health condition can't, unfortunately. At least, not without their momma right be their side. Which, for a kid, can sometimes be a bummer. I am cool as hell. Just not so cool to my 7 year old, who is voraciously seeking a little independence. I am hoping she can go this year, but if not will start the process so that she will for SURE be there next year.

And then momma can get a MUCH NEEDED week off.