Stride N Ride 2010

Alert! Only one more day to donate! We're $600+ away from our fundraising goal--would you like to support Team Double Trouble in the MDA Stride N Ride this Saturday?

We love us some MDA. Spinal Muscular Atrophy is one of the 40+ muscular dystrophies, and one of the diseases closest to a cure. The MDA provides our family with moral and financial support and so we do whatever we can to support them when we can.

I'll take your money, but I'd love your presence at Tempe Town Lake on Saturday to walk with us. Click on Team Double Trouble to register to walk (it's free) or to donate (which is not free) (obviously).

Therapy Fun

What a gorgeous day in Phoenix, and some fun therapy activities took place in the backyard with our physical and occupational therapists.




And a practice run at Easter egg hunting!
(if you're reading this in Facebook, you must click on View Original Post" in order to see the video.)

This kid can scoot.

Who gave this kid a license to drive? And would somebody tell his mother to shut up?
(if you're reading this on Facebook, click through to the original post to view the video.)

Fajitas and Filming (though, sadly, not filming fajitas)

This week, we have the pleasure of the company of our pal Big Marv. He's here to film a documentary on SMA with us, but he's such a good friend and we get to see him so rarely, so we're thrilled he found an excuse to come and hang with us.

Tonight, we dragged him off to Fajitas for dinner. I don't have a photo of Marvin at dinner, but here's a hysterical (to me) video of Kyle trying to raise his eyebrows up and down. (If viewing this post on Facebook, see the video via this link: http://www.youtube.com/watch?v=AiANegJk_fY)



Regarding the documentary that Marvin is working on for us, a few more details can be found over at Byrds For a Cure.

And please, vote for Stop SMA in the Pepsi Refresh contest! You do have to register yourself on the site, but then you can vote for us everyday this month--right now we're in first place! C'mon! All the cool kids are doing it!

The Cotten Farm

We had a great visit at the Cotten farm today. The weather was about 75 degrees and sunny. And the scenery, sheesh--the desert floor was a carpet of green, and lush vegetation was everywhere! You see, we've had a TON of rain lately (half of our annual rainfall average, and it's just March). It's crazy. I give it two weeks, and the green things will die and we'll have our brown and yellow desert back.

Today was a first: I brought a powerchair with us on our visit today. There's just so much to see and so many animals to touch (yuck) that I wanted at least one of the twins to be self-mobile. I chose Kyle's chair, and he navigated the rocky farm terrain just fine.

I had to keep screaming to the other kids, "watch your toes!", but my friend Melanie was awesome because she kept reassuring me, "Relax, they'll learn." Heh heh. I think Melanie gives her kids stitches on the kitchen counter when they get a bad cut. And she also electrocuted herself in my kitchen, while she was pregnant, when she helped me put up a wallpaper border. So while I'm not sure that I should relax about Kyle running over his friends' toes, I think Melanie is raising kids tough enough to handle it.

When Jenna learned that we were going to the farm today, she became obsessed with chickens. The Cottens have 3 cows, 5 horses, and 11 chickens. Not sure why she had chickens on the brain today, but I'd like to quote her word for word here now:

"Lauren, I'm going to catch you a chicken today. They are fast. They have short legs, but they run like the wind!"

and

"Mom, if I catch a chicken today, I want to bake it."

So, without further ado, here is a 1-minute video of Jenna NOT catching any chickens. (if you're reading this in Facebook, you'll have to click on "View Original Post" to see the video)


And I'm sharing the next video because I'm proud of Kyle. The footage itself isn't of particular interest. But he was just doing his own thing today, in his powerchair, and was pretty cool with going wherever he wanted to go. He didn't even ask for help while driving--something he does do pretty often during our driver's ed sessions here at home. The farm was a great stimulation for him--for all the kids, obviously--and I loved that he could "chase" a chicken if he wanted to and just because he wanted to. I know that being immobile for two and a half years can really take it's toll on a kid. Chase that chicken, Kyle!

Byrds For A Cure

The Byrd twins have made it BIG. They have their own logo, blog, website, Facebook fan page, and Twitter account. They also have their own tax id, but it's not presently 501(c)(3), so I won't bother elaborating on that yet.

For those of you new to my blog, Spinal Muscular Atrophy is a degenerative and terminal neuromuscular disease. There is no treatment or cure for SMA. My twins (Kyle & Lauren) have SMA type 2 and are two and a half years old. Their big sister, Jenna, is 6 years old and is SMA-free.

Our good friend, Guy Saenger, designed the website for us. He's brilliant, not to mention funny and clever and Good People and also another parent of twins. His company is Avacata and based in Fort Worth, TX, and I heart him. And his wife, Heather. xoxo to you two!

If you're reading this and have the inclination to do so, please consider clicking over to byrdsforacure.org and signing the guestbook!

The R Word

There's this PR campaign going on to rid the use of the word "retarded" in everyday speech. You know, it's that casual use of the word when we want to describe something "stupid" or "senseless" even though we also know that the word has a very clinical, serious definition.

My hilarious Twitter friend, Tanis, posted her first serious blog post on this topic, which is what really opened my eyes. And another friend--Christie, a fellow mother of twins--regularly posts on this topic (and incidentally, she regularly pimps out the SMA cause and the Gwendolyn Strong Foundation for us on her blog).

Two out of my three children are physically disabled, but nobody has ever labeled them as retarded--because for all their physically disabilities, they have no cognitive delay. For parents of kids with cognitive delays, this is not the case. Using the word "retarded" in a humorous manner or as a punchline must stop. Wouldn't you agree? And even if you're unaffected and ambivalent, how could you disagree?

When we use the word in this casual manner, it's not funny (think about it--is it funny to you?) and it doesn't make us sound intelligent. It's not a clever adjective at all--oh heavens, people, we are far too clever to use such a term in a humorous fashion. The bottom line is that it is offensive, and for general purposes, it's not creative at all. There really is no reason to throw around the word "retarded", for most of us.

But here's what's odd: I didn't realize how often I refer to things and people as "retarded" until I recently tried to (consciously) avoid the word. The word spills off my tongue daily, as it turns out. Well, that is, it used to. It doesn't anymore. I'm embarrassed now and apologize to anyone I may have offended when using it previously.

And here's the crazy thing: Now when I find myself wanting to use the term "retarded" out of habit, I tend to substitute the word "lame". You know, the person whose children can't walk is substituting the word "lame" in a derogatory manner. I really do feel like that should bother me, but it doesn't. It's only ironic.

But if anyone else needs to say "lame" instead of a more offensive word, please know that I'm totally cool with that. Just don't say "retarded". Because now? That word offends me, too.

Checking In

There are a variety of SMA kiddos sick in the hospital these days, but locally, my primary concern is sweet Alexa. She's just a few months younger than the twins, and dx'd with SMA type 1. She is such a sweetie--and her whole family is Good People--and I want her to get well and get home fast. I don't like the idea of her in the PICU and I adore her parents, Mike & Jaci, to death. It's so hard on the parents when our children are hospitalized. But Alexa has tested positive for HMV, MRSA, and staph, and was intubated Tuesday.

New to my blog? Don't know what Spinal Muscular Atrophy is? Here's my take on it. And Jessica Gustafson's take on it. And ExtraordinaryMommy's take on it. And, from a clinical perspective, here's FSMA's take on it. SMA is one of the 43 recognized muscular dystrophies. If you donate to the Jerry Lewis telethon or buy an MDA shamrock at your grocery store, then you support our cause, too. In short, SMA is a genetic, terminal degenerative muscular disease which affects children. I could go on to explain further, but there's not much else to say. It is the suckiest suck to have ever sucked--so yeah, okay, there's that.

So, Pepsi is hosting a contest called the Pepsi Refresh Project. There are different tiers of awards, but--lookie here!--the highest award tier includes an SMA charitable organization! So, yet again, I beg you to register at refresheverything.com and vote for Stop SMA. Their winnings will be forwarded to SMA research, and you can vote daily for this organization all throughout March. I am voting everyday, so if it will help, I can email you, or tweet or Facebook you to remind you to do the same everyday! Just let me know, and I can add you to my list.

And I can't let this slip past everyone--Victoria Strong has been named one of the Real Strong Women for March by sorority Alphi Chi Omega. Also, Victoria's birthday was Monday--feliz cumpleanos a ti, Victoria! xoxo

p.s. Do you Twitter? If so, find me there, would you? I follow 600+ people on Twitter, and at least half of them are useless. I'd love to get in touch with useful folks. ;)

This Week's 411:

1. Chris is sick. He's been quarantined to the game room upstairs, and tomorrow he goes to my parents' house if his symptoms are worse.

2. Jenna's asthma is acting up these days. Hello, Phoenix has had HALF OF OUR ANNUAL RAINFALL already, 8 weeks into the year. She does have allergies, so we'll continue enjoying these high pollen/mold counts for at least another month. And by "enjoying" I mean "oh em gee are you kidding me get on the nebulizer like right now, kid".

3. Lauren has been pretty sickly over the last few days. As any SMA family knows, a hint of cough or congestion or any respiratory concern is enough to put the entire family on alert. We were fortunate that day 1 only required some raised eyebrows and general attentiveness, but then day 2 (yesterday) was a hardcore Cough Assist/suction/repeat day. It's gotta be bad when the girl says, in response to my inquiry about needing Cough Assist, "yes, and I want the suction, too, Mommy."

4. Kyle was recently re-evaluated for speech therapy. Surprise surprise, he's behind in his speech, but now we're confident that the issue isn't that he's behind, but more that his sisters are so.far.advanced. Seriously, you show me a 2 year old who can speak intelligently about macular degeneration and I'll show you a photo of my Lauren.

5. Me: I sprained my ankle two weeks ago and am still not well. I am in tears over it. I just discovered jogging in December, and now my progress is so stunted. There are half marathons that I wanted to register for, but I can't right now. I feel so lazy and unproductive, and THIS is the best time of year to be jogging in Phoenix. At this rate, the high temp will be 90 degrees F before I can get back out there. I try try TRY to rest this ankle, but these three kids are really cramping my style when it comes to resting. Other than that, I have finalized my trip plans to the FSMA conference in Santa Clara in June, and am soooo looking forward to my girl's weekend in Vancouver in July! Now, all I need is a solid reason to go visit Vegas...! Also, thanks to the Olympics, I am addicted to ice hockey. Also possibly addicted to Dbacks and March Madness (UA). Also? Twitter. Sigh.

Pending: preschool meetings regarding a wheelchair accessible playground; Kyle's wheelchair approval by insurance; contract on our new wheelchair-accessible house at Norterra.

Investigating: the Telephone Pioneers of America park, and the 3/24 grand opening of a special needs baseball park!

Reading: Sex, Drugs, and Cocoa Puffs by Chuck Klosterman. Can't believe it took me this long to get to it, but it's been so rewarding. I highly recommend.

Wishing: for a healed ankle and for sunshine.

Anytime is a good time for the Bumbo

I LOVE the Bumbo seat. If you're going to have a baby, make sure you get this thing. It's particularly helpful for the twins even now at age 2, because of their weak sitting muscles. I don't let them spend tons of time in the Bumbos, because they hunch over too much after prolonged periods. But it's a great tool to drag along with us wherever we go. Witness:

Snacktime at a hotel while on vacation:


















Playtime at the hospital:



















Bath time:



















A method of grocery shopping with two kids and just one shopping cart:




Whoever invented these things, God bless you.