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.