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Saturday, January 30, 2010

Clowns and Face Masks

Today is the the day I lose my sanity. I have 13 kindergarteners and a magician clown coming over this afternoon. Clearly, someone is turning six years old.

I just hope I bought enough beer. Not for the children, obviously. And none for the clown, either. That can never end well, a drunk clown and his magic show.

On a completely separate note, I found myself running to stores like crazy all week in preparation for this party, and had to drag the twins there with me. I hate doing that, not in flu season. So many of our friends have had sick kids this flu season, but I like to think that since I never have to take the twins anywhere with me, they have stayed healthy. But since Costco doesn't offer a drive-through service (as if), I had to bring them in with me. I masked them, and then couldn't resist snapping this photo:

I have two requests of the Internet today:
1. I switched to Mozilla and now I can't figure out how to see more than one tab when I launch it. Hm, those words don't even really make sense, do they. Let's see, how else can I put it? I'd like for three different websites to launch simultaneously when I start my browser. Each site in their own tab, automatically, every time. Help me, Internet.

2. I'm having knee problems this week, but as soon as I feel better, I need a golf buddy. Or buddies. Nothing fancy, just the PV municipal golf course, but it has to be during the lunch hours, or maybe early weekend mornings. Putting practice and driving range balls are getting old. Don't get me wrong--I am the suckmaster at golf. But I love it, and I am a rule followerer, so what else can you ask for? I don't take mulligans unless my golf partner forces me to (oh yes, there have been times). The PV course isn't long, and it's cheap. Whadaya say?

Saturday, January 23, 2010

GSF Wins! Which means SMA families win!

The Chase Community Giving campaign ended yesterday, and what a campaign it was! The contest took place on Facebook, but many of us utilized Twitter to gain more attention and to direct people where to vote within Facebook. The week was a blast, and the race to win was neck-and-neck until the very end. The Gwendolyn Strong Foundation did not win the grand prize of one million dollars, but as a runner up GSF is awarded with $100,000. Yo, Chase--thanks bunches!

Just as exciting as winning the cash is all the awareness about SMA out there now. Various celebrity twitterers joined our cause, as did some celebrities and bands on Facebook. I had never heard of SMA before the twins were diagnosed, and that's true for every single person I know. If the world could witness what SMA does to our kids, could see what we SMA parents see on a daily basis, the world would be demanding a cure yesterday.

I will live to see the day when SMA is a mere inconvenience instead of a merciless, anguish-causing disease, and this $100k will go a long way to getting us there. For my non-SMA followers, I can try to gather up some information on current SMA research for a future blog post.... but there's nothing funny about SMA, so I hesitate to be a buzz kill too often. I'd lose half my followers. But I bet I can find a spot within an otherwise side-splittingly funny blog post to summarize some of the exciting things going on in the world of SMA research. Twenty-ten is our year, folks. I can feel it.

I can't recap the past week's events for you better than Victoria Strong already has, so please click here to read her summary. She also includes a list of the all the great celebs and organizations who supported GSF in some way over the past week. And I am full of gratitude for everyone's participation and am exhilarated about 2010 and everything that I can expect from this new year.

Much love to Gwendolyn, too. I just had to share this photo her family captured recently, celebrating last night's big win. Are these three not adorable? I could give them bone crushing hugs right about now.

Much love to my fellow Twitter-holics. We bonded this week, didn't we? I hope to meet you all in person one day soon! And when that day comes, the first round is on me! (unless you're underage, in which case I'm am so paying for your Shirley Temple.)
(Did I miss anyone?)

Sunday, January 17, 2010

Lauren's Message For You: Vote for SMA!

We need to keep up the momentum! Please visit the Chase Community Giving campaign on Facebook and vote for the Gwendolyn Strong Foundation! SMA is absolutely curable, folks. Make this happen. Voting ends Friday 22 January. Visit, or click the image below.

Let Lauren tell you about it.

Thursday, January 14, 2010

Vote for the Gwendolyn Strong Foundation in the Chase Community Giving Campaign on Facebook

Today is the day! Head over to Facebook, search Chase Community Giving, and click your vote for the Gwendolyn Strong Foundation! Or visit here:

GSF is committed to funding cure-focused research and has pledged the million dollars, should they win it, to SMA research and awareness. Speaking of GSF, has everyone signed the Petition To Cure SMA?

It is time. To kick. SMA's. Ass. I am begging for your vote. And I'm begging you to beg your friends for their votes. And my moderately adorable children are begging you to beg your friends to beg their friends for their votes.

Are you new to my blog, or do you already know what Spinal Muscular Atrophy (SMA) is? It's a type of muscular dystrophy that my twins have. They're two years old. They have very low muscle tone, thanks to SMA. They cannot sit on their own; they cannot hold their heads up while laying on their tummies; they cannot crawl or walk.

They have weak breathing muscles, thanks to SMA, and do not cough. They are at high risk for respiratory illness because they can't cough any congestion out of their lungs like you probably can. Their immune systems are unaffected by SMA, but because I cannot risk them getting sick we don't go to church, don't take them to public places, skip most birthday parties, don't fly them in airplanes, don't take them to an indoor shopping mall, and NEVER take them to a routine doctor's visit during flu season. They wear pediatric paper face masks if circumstances force me to take them anywhere in public. We keep hand sanitizer at both the front and back doors, in the kitchen, in the bathrooms, and in the bedrooms. I sanitize the hot points in the house and cars--door handles, light switches, steering wheels, gear shifts--at least once per week. If I fail at any of this and they catch a germ and get congested, it means extra breathing treatments at home until they get feverish, and then we check into Phoenix Children's Hospital and prepare for about two weeks of round the clock respiratory therapy, blood draws, IV's, and NG tubes. Or worse.

Their big sister, who does not have SMA, is in kindergarten, and the school nurse is on alert for signs of the flu in her classroom or H1N1 symptoms in the rest of the population so that she can warn me to keep my kindergartner home from school. I personally supply my daughter's classroom and the nurse's office with huge bottles of hand sanitizer, along with surface sanitizer and sanitizing wipes--anything to help keep my daughter and her classmates well and prevent those germs from entering my home.

All these precautions are performed in my spare time, when I'm not administering their investigational drugs, arranging their bodies into their therapeutic standers, performing two rounds of Cough Assist per day per child, or on the phone ordering more respiratory supplies or fighting with our insurance company to pay for their drugs, their many doctor's appointments, their weekly physical therapy, their breathing machines and equipment, and their power wheelchairs.

And my twins are precocious. They talk all day long, using sophisticated vocabulary and sentence structure. I spend most of their waking hours chatting with them and fetching them whatever toy suits their fancy at that moment, and am always trying to come up with new toys and activities suited to their abilities while also stimulating their brains. (And, you know, Twittering about all of it.) Because for all they can't do due to SMA, my twins are among the healthiest and strongest of SMA patients their age and love to keep me running all day long.

Do you wonder how I have time to even keep a blog? I sometimes do. It's because I stay awake until midnight and I wake up by 5 or 6am everyday.

With a cure--and SOON--maybe Lauren could roll her own body over in bed at night, so that I don't have to wake up every few hours to do it for her. With a cure, maybe Kyle could give me a hug. Sometimes I think that would feel nice, if he could lift his arms and grasp my neck. With a cure, maybe Gwendolyn's parents could hear the sweetest sound ever: a hearty cough. Our kids get pneumonia because they can't cough, so hearing a big cough from them whenever they feel the need is probably even better than hearing a laugh. A laugh might make us happy parents, but a cough keeps our babies alive. But since they cannot produce a cough, we SMA families keep a $4,000 machine called a Cough Assist handy.

My kids--all SMA kids--are extremely bright kids. They see our world, they watch other kids running around, and they know their bodies aren't right. Fifty per cent of babies with SMA die before the age of two. That's a lot of bright babies who die every year. Lauren asks me every day to ride a bike. I tell her, "Maybe one day, baby girl." What else am I supposed to say? I can't bear to tell her "No."

I can't ask you to cure them. That's up to a bunch of lab rats (both figuratively and literally speaking). But I can ask you to vote for the Gwendolyn Strong Foundation in the Chase Giving Campaign on Facebook. The million dollar prize will absolutely make the difference. Feel free to comment to this post to let me know once you've done it! Make it happen for us, folks. xoxo

Wednesday, January 13, 2010

And now, my guilt trip to convince you to join Facebook

My nature is to think up a bunch of clever, pithy comments to my blog topic, so that you think I'm smart and funny and want to take me out for a Starbucks and giggle at all my jokes while we overlook the fact that I just downed two of their muffins, but I can't manage that today.

Curing SMA is such a dead serious subject that I have to resist the urge to drop an f-bomb when talking about it. If you want to know how I really feel about my twins being diagnosed with a terminal illness, reminisce with me here. But I hope that the two more minutes you might have spent getting your usual chuckle out of my usual narrative could instead be spent viewing the video below from Bill & Victoria Strong. It contains the vital info about this disease and why $1MM to SMA research could make more of a difference than if it went to any other charitable organization. We're [thisclose] to a cure, folks.

Chase--as in, the bank--is awarding one million dollars to the charity with the most votes to their campaign on Facebook. There are so many deserving charities out there. The organizations which help kids are my personal priority, but there are so many other deserving groups, too. I get that. The good news is that Chase allows you five votes, so surely there's enough to go around so that you can vote for four charities close to your heart and also include my charity of choice. One million dollars is quite a chunk of change, but to the SMA community--the community to which my family has belonged since the twins were born--that million could be all that we need to find a cure for Spinal Muscular Atrophy.

So, to summarize:
1. Watch the video
2. Join Facebook
3. Fan the Chase Community Giving page
4. Vote for the Gwendolyn Strong Foundation beginning this Friday Jan 15.
5. Beg everyone you know to do the same.
(If my other mom bloggers were to mention this Chase contest and the Gwendolyn Strong Foundation on their own blogs, or if you would allow me to guest post on the topic this week, that would be awesome. Ping me and I'm glad to help. Voting goes from 15 Jan through 23 Jan.)

And if, after all this, you still can't be bothered to vote for the Gwendolyn Strong Foundation or even join Facebook (I'm talking to you, sister), the least you can do is send an email to all of your friends and coworkers begging them to vote, and then move ALL of your banking business to Chase out of sheer gratitude. Really, it's the least you can do, wouldn't you agree? And if you fail to support us in any of these ways, I'll be forced to add 'communist' next to your name in my Christmas Card Record book. I'm just sayin'.

C'mon and help me, Obi-Wan. You're my only hope.

Tuesday, January 12, 2010

H1N1 at the Library--Awesome.

You know that I don't take the twins anywhere with me anymore. It's flu season in general, so we stay home more, but H1N1 has been in high gear since the end of the summer, so I drastically reduced their activities to staying inside the house or backyard. And when I do drag them out with me, it's sanitize sanitize sanitize. We don't attend mass, I don't take them grocery shopping, we all sanitize our hands every time we enter the house, etc, etc.

Anyway, I heard through the grapevine recently that a child in our storytime group at the library came down with H1N1 a couple months ago. We stopped going to storytime over the summer for this exact reason. What are the chances that one of OUR storytime playmates would have H1N1? But it did happen, and bless his heart it seems that he recovered fully. But this is complete validation for me that I'm making the right decisions--the twins a-freaking-dore storytime at the library, but I just wouldn't risk taking them there with those germs floating around the last few months.

The Cough Assist costs several thousand dollars, and our insurance refused to pay for it. I completely blame our lack of Cough Assist for the twins' hospitalization last February, which is a big "eff you" to the insurance company, because it caused both babies to be hospitalized for two weeks--which cost a LOT more than a Cough Assist. (That hospital stay also cost my husband his job, for anyone who is keeping score.)

So we keep the twins at home now during flu season, or I beg my parents to sit for them while I run errands. We don't have much support here, beyond my father who is retired and happy to care for them, so with Chris' travel schedule we do the best we can.

Please, to everyone out there not affected by high risk adorable children at home depending on you, don't go to a grocery store, post office, or friend's home if you're ill. I know that there are folks out there who poo-poo'd all that craziness around H1N1, but please know that there are good people out there who do their best to keep their families healthy and who do not want to be stuck in a hospital and pray and worry that their child won't recover from a simple cold or flu. H1N1 is not simple, and with 1 in 6 Americans having had H1N1, it completely freaks me out that we could still catch it, too. I know I've said in the past that the staff at Phoenix Children's Hospital can be quite good looking, but I really don't desire to meet any of them again anytime soon. For reals.

Monday, January 4, 2010

2009 Year-End Roundup

Lauren's power wheelchair is all but ordered. All the final insurance approvals have been given, and her measurements documented, but I didn't think to add the headlights package to her chair so many months ago. Insurance has to approve that before the chair can be ordered, but she may still get it as early as this month or next. We're stoked. No word on Kyle's wheelchair.

We had a fantastic and healthy Christmas this year. It was one of the colder Chistmases I can remember (high temp was in the 50's....brrr), but there wasn't a cloud in the sky. My sister was able to stay for Christmas, but her husband had to work on Christmas Eve and we didn't catch up with him until New Year's Day.

Chris and I convinced my parents to babysit for us on New Year's Eve so that we could go to a party. The party went like this: Arrive, sit by fire bowl, listen to a live band, consume many adult beverages (me), play beer pong (him), light a bottle rocket (him), singe my hair with the bottle rocket (him), everybody laugh when it turned out all was well, and then we went home. It was a great time. It will forever be "the year that Cass' hair caught fire", I'm sure.

So, the babies are already 2.5 years old and have never been to Disneyland. Can you imagine? I feel like I'm a communist by not having brought them to that mother ship before now. So, in an obvious attempt to ride their mother's guilt trip all the way to Anaheim, they've latched onto the "When You Wish Upon a Star" song and beg to go to Disneyland. Disneyland will never know what hit it--do you have any idea how fast those power chairs can go? So for your viewing enjoyment, here they are with their song. (If you're viewing this from Facebook, you'll have to "click on original post" to view the video".)