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Sunday, April 25, 2010

Weekend Update

I love love LOVE watching the twins be self-mobile. You can imagine how often they can't do exactly what they want to do on a daily basis. I post this video not because anyone is being cute or funny, but because I want to share the thrill of watching them engage with their sibling in normal, outside play. Notice that Lauren's seat has been lowered so that she can reach the windows to the house very easily--Kyle will have the same ability, if we ever get his powerchair pushed through insurance/CRS.

In other news, week 1 of golf league is behind me. I shot something like a 96 (nine holes, folks), and that was with cheating. Twice. I am not proud. I promise to do better this week. Not to mention that I initially took off for the first hole with my bag unsecured, so the twosome behind me nearly ran over my clubs when they fell out. A clever cart boy got me fixed up in a jiffy, though, sparing me some embarrassment in case there was anyone who didn't see it actually happen. Said cart boy had a disparaging remark about Chelsea Football Club, though, so maybe he's not so clever (no tip for him). I have a CFC head cover, and the smarty pants showed that he doesn't know anything by announcing his loyalty to Manchester United. pfftttt.

Though I did out-drive my male golf partners on two holes. Ooooh, burn.

Also, my friend Julie started a new blog. It's her forum to share things that she finds on her journey to awesomeness--low-cal meal recipes and exercise, plus humor and inspiration. Subscribe to her blog. All the cool kids are doing it.

Monday, April 19, 2010

If the Coyotes need some inspiration....

If actual Coyotes fans and players are watching this, then I'm sorry. I took me about 7 takes to even get THIS, much less catch footage involving Lauren repeating all of your names, and we didn't even come close to including everyone. And next time, I'll get her to say, "throw the snake!"

I am still hockey crazy. The twins are, too. Watch and pray and LETS GO COYOTES!!

Sunday, April 18, 2010

SMA: A Mom's Perspective

It's been exactly eighteen months since the twins' diagnosis of Spinal Muscular Atrophy type 2.

At first, I would cry daily--multiple times, daily--over the injustice of this diagnosis. This went on for months. Maybe a year? I was pretty good at timing my breakdowns properly, so that they weren't terribly inconvenient. Always happened when I rocked them to sleep at naptime and bedtime. There's nothing like nursing your baby in a rocking chair in a dark room while a lullaby plays to make you imagine what life without him, or his twin sister, will be like one day. I know that none of us know what the future really has in store for our children, even our perfectly healthy and normal children. But to be diagnosed and then watch a progressive disease become more and more debilitating in your baby.... I don't know. I don't have experience with other awful childhood diseases, but I might suggest that SMA is among the worst. It's like, "hey the good news is that your kids qualify to Make A Wish. And the bad news is that your kids qualify to Make A Wish." Thanks, but no thanks. I just want to drive my kids to a park and let them play. I don't want to have to research wheelchair accessible parks and then coordinate to make two trips to this park (because I can only transport one wheelchair at a time) so that the kids can be "normal" and ride up the ramps that the other kids are running up. And make no mistake, their wheelchairs are $65,000 machines that I have had to fight tooth and nail for and fight through the bureaucracy and withstand my impatience and beg and plead and wait for. And I'm still waiting on Kyle's chair. I'm just talking about Lauren's. And don't get me started on the shit I've wrecked around here just trying to move her chair around, in and out of door frames.

Anyway, for the first 12+ months, I really couldn't talk about their diagnosis with people. With doctors, it was one thing--an exam room is a very clinical setting where I can detach myself. But in a public setting, or even just sitting in my hairdresser's chair....those were the worst moments. I prayed that nobody would make me explain that my two babies are not normal, and that they have a terminal disease and have already beaten the odds because they've made it past their second birthday and that we take no healthy day for granted. But now? Man, I can't remember the last time I cried. Well, yes I can--Logan's would-have-been birthday (he would have turned 5 years old last month, if he hadn't passed away 11 months ago), and several other children this year who died of complications of SMA, I cried for them. But I can't remember the last time I cried over the future of my own children. It's been months. Wow, what progress I've made. (Can this really be considered progress? I've stopped my daily breakdown over my children's fate? Let's save that talk for some other time, though.)

A lot of it is from coming to terms with the fact that the twins continue to stay so healthy. They don't really "look" like they have a disease. They've had few respiratory problems in their lives, overall. Another reason that my tears seem to be drying is that I've watched other families struggle with far more critical SMA-related circumstances and I realize that I don't have much to complain about here. Our "troubles" are more "inconveniences"--trouble with weight gain, the occasional cold, trying to procure wheelchairs and a minivan to transport us all, etc. Our daily challenges here do not typically include life saving measures, like they do for some SMA families. We don't yet have to have an end-of-life morphine strategy, or DNR documents prepared or anything like that.

You know, I used to work in IT before I got pregnant with the twins--I was a real person, who worked in a real cubicle for a real company with a real 401k plan and a real cafeteria with really crappy yet cheap food. I think I feel like pointing all this out because SMA took me by such surprise--you probably don't know what is SMA is, and neither did I. I used to be just like you. But ignorance doesn't make SMA go away or make babies stop dying. But let me just say that if ever there was a use for MS Project, it's when you become the parent of a child with a chronic disease. Let's assign "achieving acceptable bi-pap settings" as a "work object" and assign resources to it, right?

Before I get further off-track, let me drive home my point: I want to make sure that everyone who knows me understands what SMA is and how it affects my family. I want you to care. I want you to ask me specific questions. I didn't before. But now I do. And the good news is that I probably won't even cry now when I answer your questions. But not asking questions? That makes me think you don't care, which in turn makes me not want to share things spontaneously. I consider myself an attention whore when it comes to my kids and their disease, but I try not to invoke SMA into conversations with non-SMA families unless someone else approaches the topic first. But really, don't be afraid to ask questions now. I might even keep my sense of humor when I answer.

What you might be wondering: Yes, they are taking medication that we think helps them. Yes, they are pretty happy children. Yes, I do imagine what life would be like if all three of my children could walk. No, there is no therapy or cure for SMA. No, SMA doesn't affect their intelligence--they may even be smarter than you (but not me--I am their mother). No, they cannot sit up on their own, or crawl, or roll over, or walk. They can't even cough, or lift their heads up after a good sneeze. But they can sing, and they can dance in their chairs, and they know the anatomical names for most of their skeletons (that was my teaching) and they can brighten your day over and over again all day long just by being in the same room as you.

So there's my point. I don't cry everyday anymore. Can we please cure this disease? And then we can talk about unicorns and rainbows and hockey and golf. (My obsessions with hockey and golf are my escape, in case you haven't already guessed.)

Thanks for listening. And ping me if you want to golf. I'm always up for golf. Unicorns too. And hockey tickets (the free kind).

Thursday, April 15, 2010

Kitchen Sink

A quick update...

Kyle is doing just fine. He bounced back like nothing ever happened. I just have to handle him a little carefully still, and continue applying the antibiotic ointment at each diaper change. Otherwise, he's at 100%. I cannot believe our luck. (Obviously, I've discontinued the codeine since the hives incident.)

Jenna is steam rolling into the end of her kindergarten year. ZOMG where has the time gone? She's such a smarty pants with such personality. And she's made some great friends in her class, who happen to have pretty great parents with whom I enjoy bantering and commiserating. If we end up moving out of boundary for this school, I will be sad to leave these families.

Lauren is Lauren. No update there. To know her is to love her.

Chris just booked his trip for his twenty year high school reunion in July. In Mississippi. He's a masochist.

I am busy tuning up my golf game, as league play begins next week. Also busy cheering for the Coyotes--Hockey is my latest passion. And by "passion", I absolutely mean "overwhelming obsession". Seriously, people, how did it take the universe 33 (?) years to introduce me to hockey? Oh, yeah, it was my boy Sid Crosby and Team Canada at the 2010 Vancouver Olympics. Of course, the Sedins only further my obsession. I am fully a Coyotes AND Canucks fan and if you don't know what I'm talking about then it's your loss. Seriously. NHL--Look into it. Coyotes won their Game 1 last night (a game I attended, btw), and Canucks shall win their Game 1 tonight--puck drops in 2 hours.

Cutest Coyotes fans ever:

Kenny (Stacie's man-friend) and me at the Coyotes game last night:

Monday, April 12, 2010

He's a rock star

Wow, what a stressful day. Don't get me wrong, I get that way more stressful days hit a lot of families, especially SMA families. But today was Kyle's surgery and our first experience with general anesthesia and I was pretty wound up.

It started last night, when his anesthesiologist called to get some background on Kyle, on his current status (healthy, no complaints other than knee contractures), and on SMA. Then, I woke up at 4am today to get us off to Phoenix Children's Hospital at o'dark thirty.

Surgery was scheduled for 7:30am, and the doctors were running early for once. Kyle was pretty thrilled with a rocking horse in the waiting area (I had to prop him on the horse the whole time, of course), but he was less than thrilled when I handed him off to the anesthesiologist outside his OR room.

Seriously. How do parents do that, leave their kids and walk right out of the OR? And let me tell you--I am TOUGH. I have zero trouble stern-talking my kids into blood draws and vaccinations and timeouts. You will be still for x-rays. You will stop spitting. You will sit properly at the dinner table. You will not pick your nose in public. I have no mercy. I'm all kinds of "rules with an iron fist". But sweet Jesus the kid was screaming, "no no NO momma momma MOMMA MOMMA!" and was slumped up against the shoulder of the anesthesiologist (you SMA parents know what I'm talking about when it comes to a stranger handling your type 2 baby) and the tears were a'flowing. I marched out of there seven different levels of brave. Sort of. Unless you looked too closely and then you could see my distraught.


Worst case scenarios would have involved terrific trouble inserting his IV. Requiring use of a ventilator once anesthetized. Even potentially a lung collapse after extubation. Also a 1-2 day hospital stay for observation.

Best case scenario involved no ventilation, no respiratory concerns, short operation.

We got the best case scenario. Surgery was at 7:30am, and he was cleared for discharge by 10:30am. We barely got to spend any time with Jaci and Mike Felix, whose daughter Alexa is going on week 5 in the PICU for severe respiratory illnesses, and I actually was sorry that I didn't get to hang out with them more. They've been stuck in the hospital for over a month, and we consider them good friends and I looked forward to hanging out with them in the parents' lounge. (There IS a parents' lounge, right? Complete with free wi-fi and unlimited bottles of Jack Daniels and chianti? You look confused--is this assumption wrong?)

I got him home, he had a little nibble of food, took a bit of a nap, watched Blue's Clues, ate some cupcakes for dinner (hi, I'm Mother of the Year), and then went to bed early.

I'm going to try to block out the part where this afternoon I dosed him with his Tylenol 3 and he experienced an allergic reaction and I sat there with Lauren's Epi Pen Junior in my hand wondering when it was "shit or get off the pot" time when it came to deciding he was okay enough or just plunging it, and then he stopped with the choking and coughing and seemed okay-ish and I called the doctor and so hey we're going to list "codeine" as a drug he's allergic to from now on.

In any case, he's doing fine tonight. Sleeping (mostly) soundly. At home. No more hives or purple swelling. Lots of Motrin. A decent amount of stitches in places you don't want to know about. Good times.

My hat is off to you more experienced parents, when it comes to surgery and stitches on sensitive man-parts. As it turns out, handing my baby off to a relative stranger while said baby goes into hysterics is my kryptonite....

The only photo I took the entire day, in recovery:

p.s. GO PHOENIX COYOTES. AROOOOOO! First playoff game is Wednesday night, 7pm. I won't be there, unfortunately. Blarg.

Sunday, April 11, 2010

Kyle's Boy-Parts Surgery

Kyle and his poor undescended testicles will undergo surgery at PCH tomorrow morning. The procedure is simple and shouldn't take long. For most any other boy it would be an out-patient procedure. But because general anesthesia is involved, and his respiratory functions are so weak, dramatic precautions are being taken during and post-op which involve his staying overnight in the PICU for continuous observation. The hospital has wi-fi, so you can look for my updates on both Twitter and Facebook, if you're interested.

Coincidentally, our friend Alexa Felix is going on her second month in the same PICU. She's been a very sick little girl these days, the poor thing. I wish she was home and healthy, but it will be good to catch up with her family while I'm there.

Saturday, April 10, 2010

Going Bald to Save Babies!

Meet Barb Zahn. Her baby Lucy has Spinal Muscular Atrophy type 1. If Barb can raise $10,000 for SMA research and awareness programs by Lucy's first birthday on July 9, 2010, she will shave her head! (You should see Barb's hair today--it's beautiful.)

Watch her CNN iReport video plea by clicking this link.

Barb is $1100 towards her goal--check this out and consider contributing, or even just joining the Facebook cause and inviting your friends to do the same.

Friday, April 2, 2010

Powerchairs at the Park

Today, I had the gumption (and an extra set of helper hands, in my mother) to make two trips to the wheelchair accessible park nearby to bring all three children and the two powerchairs for some fun in this gorgeous Phoenix winter weather.

This park isn't particularly big, but the playground set can easily handle multiple powerchairs, and the twins LOVED it.

Don't get me started on how choked up a parent can get when their two year olds go where they want to go because that's what they damn well please. They can't crawl or walk, so if they want to get from here to there, they have to communicate that desire to me, so that I can pick them up and carry them. I never aim to guilt-trip parents of able-bodied children (especially considering that 1/3 of my children is able-bodied), but really, if your kids are "typical" kids, and you can imagine life in my twins' shoes (and so many of you already can), the concept of self-mobility is a life-changer. I RELISH the occasions when they can be in their chairs and go wherever they damned well please.

Hey look, a basketball court is right over there!

The adapted swing.

This is the Telephone Pioneers of America park and it's one hell of a wheelchair accessible place. It's where I guess we'll be visiting soon when the twins tire of being unable to ride up onto the play structure at their preschool. (Hey--it's true. I'm just saying.)