...Bahamas, Bahamas, Bahamas...

Poop today, Disneyworld tomorrow.

2012-01-28T19:37:00.002-07:00

The last 30 hours have been nuts. We get on a plane tomorrow headed for Orlando, but this time yesterday we were consulting with an E.R. surgeon about disimpacting Kyle's recent bowel obstruction. And today Lauren woke up with itchy eyes and terrible secretions, so it's been electric suction after Cough Assist after electric suction.

Mickey Mouse would not approve of our weekend thus far. I'm keeping our fingers crossed that tomorrow's long trip will go better than we ever could have imagine.

Also hoping Kyle poops. Like, a whole lotta poop. May The Force be with him, etc.

Getting Prepped for Disney World!

2012-01-24T09:36:00.001-07:00

Last night our lovely Make A Wish granters came over for Lauren's big send-off party! We leave for Disney World next week. Huzzah!

She *might* be getting excited.

Zip Lining

2012-01-13T20:53:00.000-07:00

Today was spent hanging out with the Arizona BBQ Association at the Food Truck Festival. The Arizona BBQ Association has provided an amazing meal for our 200+ families at our annual Walk N Roll to Cure SMA for the last few years, so we enjoyed the opportunity to support them when they're out "in the wild" doing their thing. Today saw some fantastic food find itself down my Dorito hole, and saw Jenna experience her first thrill ride. Enjoy--'cause she sure did.

How many days left 'til her Make A Wish trip to Disney World?

2012-01-10T21:09:00.002-07:00

This many.

I want creative ideas on how to manage, scrapbook, remember, or otherwise document something as out-of-this-world as a week at Disney World thanks to Make A Wish. With my uncreative brain, I figure I'll amateur photograph the heck out of the trip and make it it's own photobook via Shutterfly. But what else? WHAT ELSE CAN I DO? WHAT ELSE DO PEOPLE DO IN THIS SITUATION, INTERNET?

May the Force be with You. No, a Little More to the Left..

2012-01-03T17:33:00.001-07:00

The Force is strong with this one. Any day, at any time, he might stop what he's doing and use The Force on you. He's very serious about this. In fact, I've yet to disrupt him, make him grin or giggle, or otherwise mess up his Forcefullness when he does this. And if he ever does this on you, it's important you stop what you're doing, resemble someone having a grand mal seizure, and "get all wrinkly".

(don't mind all the wine and mess--still haven't cleaned up from New Year's Eve Wine Extravaganza '11.)

We need a batter, not a broken ladder. OH HI DBACKS!

2011-12-22T21:55:00.000-07:00

Kyle hasn't been so great these last couple of months. He's missed more than 6 weeks of school due to a bout of upper respiratory junkyness, for one. Ultimately, we even had to bring him to Urgent Care due to an ear infection--and Urgent Care typically won't see medically fragile patients at all, but they did that day because I was just that desperate. (kudos to our urgent care--world class, those folks.)

Today, Kyle saw our favorite orthopedic surgeon. Unfortunately we learned that Kyle has a 21 degree spinal curvature. This is bad news. For now, he'll get a soft TLSO (back brace) in hopes that we can put off back surgery for a few extra years.

That's the bad news.

The good news is that we got to enjoy, again, the holiday decorations at Phoenix Children's Hospital! Our favorite, hands down, has been the Arizona Diamondbacks Christmas tree. It's incredibly tall (I'm guessing twenty feet?) and decorated with Dbacks ornaments, paraphenilia, and gear. Kyle is obsessed with baseball, and the Dbacks, so he spends lots of quality time with this tree--touching it, talking to it--each time we have to go to the hospital. Today he zoomed right over to the tree, carelessly plowing through a small crowd of folks standing around the area. Turns out Kyle interrupted a meet and greet with Willie Bloomquist, of the Arizona Diamondbacks. Kyle is only four years old, so has yet to memorize the Dbacks roster, but as we drove home I emphasized who he just met and he finally "got" it. Nearly an afterthought, I asked Willie for a photo. Kyle appears as though he couldn't have been happier if Willie had offered him a light saber (Kyle's other obsession).

The Dbacks tree, with a little more detail (from a previous visit).

Thanks to the Dbacks organization, and to Mr. Bloomquist, for arranging to meet the kids of PCH and making a little boy's day.

mm mm not good.

2011-12-18T19:36:00.000-07:00

This weekend we embarked upon some holiday baking. It was actually a pretty sad effort--one was a new, unproven cookie recipe involving powdered sugar, shredded coconut and egg whites. That turned out to be a fail. I hate when I follow a recipe down to the letter and it still doesn't turn out.

The second attempt was for cookie cutter cookies. I particularly hate these. They are delicious, yes, but given the sweat and tears and four letter words I've always had to throw around my kitchen when I make them, they just aren't delicious enough to make them worth it. But I have kids now. Kids love using cookie cutters. And let's face it--once we have kids, we forgo our own comforts and conveniences and do things for THEM. Though this time, I bought ready-made sugar cookie dough ("just add 1/4 cup flour, mix, and roll out!") and then let the kids have at it with Christmas cookie cutters.

I was meticulous with the shapes, took oh so delicate care of every cookie form they made and gently placed them onto the baking sheet. They were so proud of their work! Until the cookies went into the oven and their snowman-shaped cookie turned into a big blob. Coincidentally, their gingerbread man, reindeer, and mitten cookie shapes also baked into the same blob. And as I sit here and type this and munch on their blob-shaped angel cookie, I am annoyed that I mailed it in with a store-bought dough instead of going all the way and making my own labor-intensive sugar cookie recipe.

Well, at least I got a good photo op out of it. Behold my silly bakers.

May the Force Be With Them.

2011-12-14T14:46:00.000-07:00

Sometime last month there was a Star Wars marathon on television. Kyle caught a few minutes of it and has been hooked ever since. He's been watching one of the Star Wars discs at least once per day, and imagines everyday objects as light sabers as he and his twin sister act out scenes from the movie.

It's quite endearing.

What follows in this clip is a sampling of his obsession. I feel bad for George Lucas (and John Williams, for that matter) that our phone number is unlisted, but if he really wants Kyle to elaborate on his favorite moments in Star Wars then I guess he can just leave a comment here like everyone else...?

Ryan House Run 2012

2011-12-11T22:44:00.000-07:00

Okay so I have, like, a ton of friends who walk--or, more ridiculously, run. What's up with those weirdos, eh? We have cars, dudes. No need to run. Seriously, runners are weirdos.

So hey yeah, I am a weirdo. I run. I technically haven't run in a few weeks, but in general I can run and I'm conditioned to run (for example, if zombies were to chase us I could probably run faster than the slowest person around, which is really all that matters when it comes to zombie chases). But now I have a better reason to run. And so do you. Or hey--you could even just WALK! I don't judge.

The Ryan House Run at DC Ranch in north Scottsdale is three months away. You can sign up for the 5K, the 10K, or the half-marathon. Or even the 1 mile family fun run. Team Double Trouble needs more than two people on the team this time (thanks for last year, Jess!). This event is so much fun, does so much good, raises so much money, and is so newbie-friendly that you ALL should register! Five kilometers is just 3.2 miles. Thirty minutes of your time and effort. Easy peasy.

If you wish to challenge yourself with the 10k or half-marathon, that's up to you--but you can still use this link to register with Team Double Trouble. I will run(ish) the 5k. Team Double Trouble will meet at DC Ranch early, give fist bumps, then off to our starting places. Following our events, we shall meet up again afterward, give more fist bumps, compliment each other on our Lululemons, agree that we haven't been to The Herb Box in forever and we should go back soon, compliment the weather, and in general have a great time. Even if you can't commit to the race, you can show up to cheer me on, bribe me with a mochachino, peruse the raffle tables and gamble a few bucks to win a wine basket or sports paraphernalia

I've already blogged about what a great cause the Ryan House is. Sign up to do it with me this time. Right now is the perfect time to start training for it--the Couch to 5K program was even designed for non-runners. Your heart will thank you. I'll thank you. Simply put, I want to see your face on March 3rd, 2012. C'mon, Phoenix! I know you want to see me all hot and sweaty and gross before I've even had enough coffee to be pleasant to you.

Fine--for those of you who will won't get off of your derriere's long enough to run, but still wish to support the cause, donate to The Ryan House via Team Double Trouble here. It's for the kids! As usual!

Rock Star Lauren

2011-11-18T16:41:00.000-07:00

Lauren got new purple, glittery sunglasses this week, and she was insistent that I record her doing something. I am confident that she has vocal stylings up the wazoo, but she may need some counsel from a legitimate lyricist.

Halloween 2011

2011-11-14T20:28:00.002-07:00

Halloween '11 was sort of awesome. It was filled with tricks (check out the costumes our friend made for our wheelchairs) and treats (check out the cavities the kids have from all the candy two months from now).

I initially wrote about our Halloween costume selection process here and here, so I won't repeat the stories. But I do have additional photos--yay! Here you go.

Here the kids are with my friend Kelly's girls--Super Girl and Bat Girl! That's a lot of estrogen for Han Solo there to navigate his way through.

Here's a good look at Lauren's beehive--our friend Marie made this for her! She also made Kyle's Millennium Falcon! Marie is good people. You can gaze adoringly at Marie's gorgeous smile--and read about her life with lupus--here. Many thanks to Marie, who I hereby appoint chair of the Committee to Develop Wheelchair Costumes for Halloween 2012.

I Hate Stairs. Part 2.

2011-11-04T22:08:00.000-07:00

Over the summer (mid-July, I think), I gathered up the children and we visited Polar Ice in Peoria, AZ to get a taste of some ice hockey in the off season. The experience was miserable and so far ranks as the worst wheelchair-friendly experience we have ever had.

Polar Ice's standard doorways were not wide enough for our wheelchairs (which are not overly wide, or even the widest out there). Their handicap-accessible doors were locked from the outside. I had to leave the children outside, unattended, in 110 degree F heat, to go inside to find someone to unlock the doors. We finally entered the building. We had us some NHL rookie camp hockey. When it was time to leave, we found that the doors were locked again. What if there had been a fire? What if the building had to evacuate? The woman at the desk seemed unbothered by my suggestion that my four year olds in wheelchairs being unable to exit her building in an emergency could pose more than a few problems. My grade for Polar Ice's wheelchair friendliness is an enormous "F". I will never, ever return there--even if the wheelchairs aren't with me. Polar Ice exhibited the most callous, inconsiderate behavior I have ever encountered. I was shocked, frankly. It was our first and last experience there. There is not an excuse in the world which can make that okay--all I can suggest, Polar Ice, is to train your staff to keep those automatic doors unlocked during business hours.

Conversely, I've taken the twins in their wheelchairs to the Ice Den in Scottsdale a half-dozen times. We've been there to watch hockey practice a few times and for free-skate a few times. Every single time we've been there, the staff and patrons roll out the red carpet for us. The staff dotes on the twins, the other patrons chat them up every time, the handicap accessible automated doors always work, and I never feel like I am imposing.

You lose, Polar Ice. That experience was terrible that I may actually hate you. I'm still sorting through my feelings so I hate to be to definite, but that experience ranks in the top 3 worst wheelchair-related experiences we have ever had. And we get out a lot.

Trunk Or Treat '11

2011-10-30T22:36:00.000-07:00

The kids enjoyed Halloween Part 1 tonight--a church sponsored trunk-or-treat event! This is such a fun age to watch kids enjoy Halloween! They had so much fun. Lauren is so pleased with her costume that she might just continue wearing it to bed for the next few weeks. Jenna made quite the stylish ballerina princess--probably because her new Twinkle Toes cost more than all of the rest of her costume combined. Kyle barely looked in costume (a pirate) since he wouldn't wear the pirate hat ("too scratchy") and his mother misplaced the pirate shirt (vest?) and so improvised with a pocket tee (if pirates didn't have pockets, they deserved the scurvy). Therefore, he was mostly a kid driving around in striped pants and otherwise in street clothes, begging people for candy. This only bothers me when the candy is cheap and tonight it wasn't, so you won't find me complaining tonight. Also, this was Kyle's plan B costume--his eventual award-worthy frock is still being built by our good friend Marie, so we sort of half assed it tonight.

I took video, for those of you who are unfamiliar with how a Trunk or Treat works. My video is actually not very interesting otherwise, but that's because there were too many third parties wandering around who I could not control and so just filmed the kids doing their thing.

SMA Wingfest!

2011-10-24T06:32:00.000-07:00

First, there were two boys who like to eat and had not seen each other in months. But then in a bizarre display of creativity and healthy appetites, they decided to try to out-eat each other in hot wings for a good cause.

Suddenly, these boys had various friends sign on, they created a website, procured a sponsor (Buffalo Wild Wings!) and turned what was just a pissing contest into a legitimate, entirely fun and creative fundraiser for one of our favorite charities--The Gwendolyn Strong Foundation.

Read (and listen, if you're a fan of the Canadian accent) about the event here. Support Chris' efforts here.

Ultimately, GSF and all SMA families are the big winners here--GSF funds critical research to find a cure for SMA. If you'll check your notes from last class, we all hate SMA. And this crazy excuse for friends to hang out and eat chicken wings has raised over $2,000 for GSF. I have no words to express how stunned, humbled, and honored we are to have such amazing, generous friends.

Enormous thanks go to our neighborhood Buffalo Wild Wings, who is not only reserving space for our crowd that night but is also providing wings for the contestants on their own dime! We are so thrilled. Money we don't spend on this event means more money to GSF which means more money to fancy academics in lab coats who want to add "cured a pretty terrible disease" to their resumes. Help us pad their resumes. Be there or be square.

What: SMA Wingfest (on Twitter: #SMAwingfest)
Date: Thursday, October 27th, 2011
Time: 7pm
Where: Buffalo Wild Wings 2510 W Happy Valley Road--between Best Buy and the Harkins Theaters.
Scroll down to read about the teams and donate: http://www.crowdrise.com/SMaWingFest

If online payment is not an option, send your check with "SMA Wingfest" in the memo line directly to GSF:
Gwendolyn Strong Foundation
27 W. Anapamu Street, #177
Santa Barbara, California 93101

Thank you, all who have donated so far! We are so thrilled with your response and can't wait to see the final results from this nutty event!

"How do you even stand yourself?"

2011-10-22T23:21:00.003-07:00

Kyle woke up screaming for me to turn him at 0'dark-thirty today. It was completely dark outside, yet he greeted me with the silliest wide-eyed massive-grin face. I was grumpy about having been woken up, but his expression lightened my mood. As I turned him, I told him, "Dude, you are a crack-up. How do you even stand yourself?" He let go of the silly face and informed me, "Momma, I can't stand."

Kids can be so literal that it hurts.

Our 6th Annual Arizona Walk N Roll to Cure SMA is upon us. This year marks our third appearance at this Walk N Roll. Last year we couldn't all attend, as Lauren was in the hospital fighting pneumonia. The rest of us crusaded on at this Walk without her, to help raise money to cure this terrible, terminal disease. Six months later her twin brother also spent a couple weeks in the hospital with pneumonia, and that's when I realized that we can expect at least one hospitalization per kid per year. And somehow we've gotten lucky--so many SMA families spend ten times that in the hospital every year.

What did you do with your kids this summer? Take them to the beach? Road trip to see grandparents? Sleep in and enjoy the lack of rigid routine that the school year typically brings? For us, we had no less than twenty six doctors appointments for the twins this summer. We kept up with their neurologist, pulmonologist, gastroenterologist, orthopedic surgeon, general surgeons, and pediatrician during the summer. We also spent many, many hours this summer with the twins' nutritionist, orthotics specialists, and with the therapists and genius engineers at their wheelchair clinic. Not to mention the hours I spent on the phone trying to coordinate these appointments, arguing with our health insurance company, and then driving us downtown for these appointments. My twins have dealt with more blood draws, IV insertions, and surgeries this summer than most people will their whole lives. They are trained how to behave in their wheelchairs in public. They rarely deviate from my wheelchair rules because they know they could hurt someone, or themselves, if they do. The public seems tickled with four year olds in wheelchairs. I think the public assumes that they will always be in wheelchairs. Terrible assumption. It doesn't have to be this way. That's what enrages me--as a mother, and as a person with common sense.

I'm not sure I can adequately express how much we hate SMA. I hate this disease with every fiber of my body--a body which is strong enough to allow me to stand, walk, sit up, and even turn over in my sleep. My twins can't do any of these things. They are completely dependent upon us to do these things for them--including waking up multiple times per night to turn them over or adjust their hips to relieve the pressure points that their small bodies place on them. The strongest "muscle" they have is their brain, though--it's doubtful you'll ever meet someone as smart as a person with SMA.

There is no cure for SMA. There is no treatment for SMA. There is no drug regimen to help manage the symptoms for people with SMA. But there could be. Soon. Research in the areas of gene therapy, stem cell therapy, and other traditional drug therapies are in the pipeline. This is exciting. SMA is one of the very few muscular dystrophies which are [thisclose] to a cure. A cure! Can you imagine? I can. But even if a cure is found, each year that passes takes a toll on their skeletons, muscles, and organs. Lauren is to the point where no injection of an insta-cure is going to fix her scoliosis, for example.

As I type these words I can hear Kyle's scraggly breaths as he sleeps. His body is trying so hard. I need to ease his respiratory system with the bipap machine but I can't sell him on it. He doesn't want to be constricted with a face mask which blows cool air into his mouth, and it's not easy persuading a preschooler to do something he doesn't want to do. He told me today that he can't wait until he gets bigger so that he can play baseball. I keep telling him that it's not his age, it's his muscles. He can't throw a baseball because he can't really lift a baseball--not because he's a baby, because he's not. "But Momma, I can play baseball when I get bigger, so I can stand up and throw, and then I will hit it like Justin Upton and make a home run!" I never tell him he won't, because what do I know? Stranger things have happened. Science is extraordinary. Kyle is so proud of his Dbacks that he wants to be one, but I am the one who has to tell him that he will never stand. He will never play baseball. Even if his Make-A-Wish is to eventually throw the first pitch, he can't throw he ball more than a foot.

And Lauren, his twin sister who also suffers from SMA, is an absolute riot. She has an incredible memory, would put Kate Middleton to shame with her style and manners, has a smile that lights up the room, and makes you want to give her candy. How I know that is that we hang out at all kinds of places and people she meets feel compelled to give her candy. Mostly, I wish that people felt compelled to ask her mother if giving her candy was okay. This girl, I am telling you--if charm were a currency, she'd be a bazillionaire. I hate even putting her to bed sometimes, lest I lose a great conversationalist.

But I will outlive both of them. I can't change that. What I can do is raise money (and disease awareness!) to help find a cure so that no other parent has to endure this diagnosis. So that no more children are born with such a death sentence. As a member of the board of the Arizona Families of Spinal Muscular Atrophy, I help coordinate this Walk N Roll and I need your support. Join our Team Double Trouble and walk and raise money with us (email me to join the team), or simply donate to Team Double Trouble. If your company could use our 300+ walkers knowing that you support our cause, contact me for sponsorship details (starting at just $500) and so that I can get your .png file. I am also still looking for local firms to donate nifty stuff for our raffle--gift cards, merchandise, hotel stays, golf rounds, seats to theater or sporting events, services of any type.

This week also marks the three year anniversary of the twins' diagnosis. October 26, 2008 is a date I won't forget because it's the date I finally allowed myself to Google "spinal muscular atrophy" after weeks of wondering. The doctor warned me not to until the twins' blood test results came back. Should you wonder why I don't want anyone else to have to Google it, just Google it. And then join us at our Walk N Roll next month. Let's work together to ensure that we don't need to hold these Walk N Rolls another year.

Recipe Help!

2011-10-08T14:59:00.000-07:00

I need brushchetta and a warm spinach artichoke dip (slow-cooker recipe, please) which will knock people's socks off. Anyone have a favorite recipe you can link me to?

I can google for these, but there are lots of recipes out there and I'd rather make something that comes with a personal reference.

Don't all line up at once. Just kidding, I need this in like three days, so hurry up you slowpokes.

Long week.

2011-10-07T21:44:00.000-07:00

All three kiddos are fully entrenched into their school years. Planned surgeries are over with until next summer, post-op visits are almost finished. Flu season is about to begin, and so the family goes on lock down in T minus one week.

And here we approach our biggest fundraising season. This is the time when I usually dig deep down and fumble through some dark, philosophical thoughts to ramble something here compelling enough to garner some of my friends/readers to donate bucks to our cause. This week, the twins have provided me with some particular thoughts regarding their disease and their abilities, and so my typical post pleading for donations has practically written itself.

It's been a long week. A week testing my patience, my sanity while raising a seven year old and four year old twins, and my creativity in responding to some difficult expectations and questions my twins have for their futures. They're only four. Why must they test me in such ways or think so long-term? I'll write about it soon. Our cause needs your buck and I need to vent, so it's good timing.

Until then, I hope you and yours are happy and healthy. And I hope you're washing hands like there's no tomorrow. It's almost flu season, ya'lls.

6th Annual Walk N Roll to Cure SMA -- 11/20/2011 Scottsdale, AZ

2011-09-18T22:18:00.003-07:00

What: Walk N Roll To Cure SMA
When: 20 November 2011, 9am
Where: El Dorado Park, Scottsdale AZ

I need a dozen or so volunteers to work the registration table, raffle desk, buffet lunch setup, to post our signs on the walk route, and host the kids games. It's easy work--show up by 8am, then you're done by about noon. Your family is welcome to come, too--the weather should be perfect as usual, there is a playground within easy walking/rolling distance, and you can't beat the company you'll be keeping (me!). Scouts can earn community service hours, your kids can have a little fun, and your whole family can meet and talk with our other fundraisers and other families affected by Spinal Muscular Atrophy. The jobs involving cash may be better suited for adults, but older kids are more than welcome to volunteer as well--we will keep them busy, I promise. And the volunteers will never be far from the event organizers, so if you find yourself with a question we will be right there to help.

If you want to volunteer only your time, comment here or contact me directly. If you care to volunteer your time plus a few bucks, join Team Double Trouble by clicking here, and then ping me here, too.

Thanks to the Arizona Barbecue Association for providing lunch at our event again, free to all of our attendees--fundraisers and volunteers! Also, every year we hold a raffle for some great prizes, so even if you think you are coming to *just* volunteer, you might consider bringing your checkbook just in case some of the raffle prizes are too appealing to resist. Because they usually are!

I guess Kyle doesn't care for hospital stays.

2011-09-12T12:02:00.001-07:00

Locally here in the southwest, we have an amusing commercial for a tire company. The premise is that a man in the hospital is completely bandaged with broken limbs is listening to his doctors exchange niceties about a tire deal and is so moved that he leaps out of his bed--and out of traction--ripping out tubes and IV and all, conceivably in order to get in his car and take advantage of such a deal.

The first few times Kyle saw this commercial, he was upset and disturbed because he thinks the man looks like a mummy (he does). But now he loves watching this commercial. Why? He has recognized the patient's free will. That guy can get up and run out of his hospital bed. Yes, Kyle envies the actor in that commercial because that man can leave his bed and leave the hospital.

Kyle: I wish I was like that man with the casts, I wish I could get out of my bed and leave the hospital.

Me: Oh, it's okay, his doctors were right there taking care of him and he didn't really HAVE to leave.

Kyle: Mama! When I'm in the hospital, I wish I could jump out of bed and leave.

Me: It's okay, hun. If you're in the hospital, I'm with you and you're right where you're supposed to be. I wouldn't want you to leave, not until the doctors say we can go home.

Kyle: Mom, the next time I'm in the hospital, I want my legs to get strong and I want to run out of there like the man on that commercial.

My heart = broken.

Kitchen Sink

2011-09-09T21:42:00.000-07:00

I haven't done a great job lately of utilizing this blog to update certain family members about life. Let's remedy that.

Jenna is in week 3 of second grade and she's a rock star. She has lots of homework but finishes it rapidly every night. We've been walking to school every morning (too hot to walk home in the afternoon), and that's been nice.

The twins are back into the groove of school, but they're sick. Lauren seemed to have monster allergies last weekend but was back to near-perfect health by the start of the week, but Kyle caught something (which he passed on to me, yay) and has had this lingering cough all week. He missed every day of school this week, though today seems to be much better. But now Lauren has a fever, terrible cough, and is throwing up. I'm getting frustrated. And worried.

I managed to golf three times this week. Go me.

Also, baby shower planning in full effect. You're welcome, economy.

So, to make up for my laziness in blogging, enjoy some first day of school photos:

Year Three of a closed-eyes photo of Jenna on her first day of school.

I Hate Stairs. Part 1.

2011-09-03T21:41:00.000-07:00

I nabbed the title of this series from my friends at I Hate Stairs. It's actually a great site, administrated by two good lookin' fellas who really, really hate stairs.

I chose to steal this title from them because as a parent of two kids in wheelchairs, I really do hate stairs. They do, too. I scream, you scream, "we all hate stairs." When the twins come within fifteen yards of an unguarded staircase, I panic and try to remember if I took my blood pressure medication that day. Even though they are just four years old and are incredibly mature, but that doesn't make me freak out any less.

When it comes to our wheelchairs, I freak out over lots of scenarios. In fact, whether I have the twins with me or not, I find myself surveying everything about your establishment to determine how wheelchair friendly it is.

Here in the United States, almost every building must be handicap accessible. But there is a big difference between 'handicap accessible' and 'wheelchair friendly'.

I'll spend my money anywhere once. If you want me back, you'd better be wheelchair friendly. If you want me to not complain about your lack of accessibility, then fix it. This "I Hate Stairs" series serves as a forum for me to vent about establishments who are wheelchair-ignorant. It's not that I hate you, it's that I hate that my children can't come into your store. It's a fine line between me bitching about a bad experience and you taking my feedback seriously because maybe just maybe we're not the only family with wheelchairs who dreads patronizing you because we cause a scene just trying to enter your store.

I'm not EVEN going to address Gymboree here. Every family with a stroller hates Gymboree's lack of accessibility. That's a given. Oh c'mon, Gymoree--like you didn't know? QUIT PACKING 30 CIRCULARS INTO 400 SQUARE FEET OF SPACE. That we still purchase your product at all means that moms who are desperate for adorable, quality children's clothing also have some child-less time during the week when we can visit you without strollers. Or wheelchairs. Do you catch my drift? Stop that strategy of blocking your doorways with tables of corduroys on sale for $19.50--that's all we can even see because we can't navigate a stroller into your store for all the mother effing displays. Whew. Okay then, stepping off my Gymboree soap box. So, I guess I addressed Gymboree even though I promised not to. Gymboree: I really do love your product. If I could ever reach your cashiers to buy it, you'd be in the black. I pinky swear.

No, this "I Hate Stairs" series will be focused on specific local establishments. Do you own an establishment in the Phoenix metro area? Is it wheelchair friendly? If not, then maybe you can look forward to finding yourself highlighted in this series someday.

I've got news for you, world--if my kids' wheelchairs can't get into your store, then neither can most medical strollers. And twin strollers. And senior citizens in walkers. If you have steps at your entrance, then you darned well better have an alternate entrance--or you will lose business.

Seriously, I am done with apologizing to YOU because my kids can't get into your store so that I can buy something. Our wheelchairs are not temporary inconveniences, they are our reality and I will apologize for inconveniencing you as soon as you find a cure for neuromuscular disease. I will not stand for ambivalence and apathetic attitudes for another minute. If you aren't in a designated historic building, build my kids a damned ramp.

Now, excuse me for a moment while I take the children to Wal-Mart BECAUSE THEY HAVE NO BARRIERS TO THE ENTRANCE AND ALSO WIDE AISLES AND AN UNDERSTANDING ATTITUDE. That may be the first/only compliment I make to Wal-Mart--but they get it. You don't. Suck on that, able-bodied smaller-retail decision makers.

Hexbug. Two thumbs up.

2011-08-26T06:34:00.001-07:00

I've mentioned that I spent some time at BlogHer '11. I spent major quality time at the Big Toy Boo Sweet Suite Event (a kid's toy expo). One of the toys they sent home in my swag bag was a bizarre--and robotic, intimidating, yucky--looking-item called a HEXBUG. I don't know what that really means, because the thing is not in the shape of a hexagon. Maybe the toy is cursed with a hex? But even if it is? It's worth it because my kids love it.

To my friends who have children with limited fine motor skills: this is a toy which is best kept somewhat confined (such as within a high chair tray--see video below). The "bug" seems to run on a watch battery, but uses a simple, small track. You could do away with the track if your table/surface doesn't accommodate it, but the bug should be run on a level surface with some sort of perimeter barrier. Because of this, the child should be able to sit up and have some neck control.

That said, once the child sets the "bug" into the track, it's simply a matter of watching and enjoying, and occasionally picking up the bug to reposition it. There is no further physical engagement with the toy, cognitively speaking, but the kids love watching it, picking it up, feeling the crazy vibrations on the legs, and watching it "sniff" it's way out of the gates. Their squeals of glee over this toy have been priceless.

For the price ($12.99), it's a great choice for lots of kiddos, including those who need something new but have limited hand dexterity/strength. I shot a quick video to demonstrate this thing--must admit, I think it's kind of cool.

[I don't ever blog about a product to get paid for it. (There are many who do, and they're good at it. I wouldn't be good at it.) I blog about products which genuinely help my family--typically, if I blog about a product, it's a toy that my special needs twins either love or hate, and I share our experiences in order to help other readers with similarly-abled kids understand if the toy might be a good fit for them. Also? The manufacturer has no idea that I own the toy or am writing about it. If they should choose on their own accord to send one of my kids to college based on my positive review of their product, then so be it. But I think that critical reviews are important, too. We parents of special-needs kids waste too much money as it is on things we think will be perfect for our specific kiddos but aren't.

My point is that nobody except you knows that I am yay'ing or nay'ing a product. Ever.]

This is SMA.

2011-08-11T09:10:00.001-07:00

This is SMA.

Kyle just turned four. He adores baseball, golf, soccer, tennis, football, boxing, and hockey. He thinks he can play these sports when he "gets bigger". He will get bigger as he grows older, but he will never stand. He won't play these sports, at least not how he imagines he will. And we are the ones who have to tell him that. He is in a wheelchair. Cognitively, he is advanced (that means smart) (I only clarify that because even I wouldn't have known what that meant until years ago when someone told me that he is cognitively advanced). This week, he told the O.R. staff at the hospital that he can't wait until he gets older and he can stand. He happened to be in the O.R. to have his Achilles tendon completely sliced through so that his feet won't turn out. This means that even if a cure for SMA was announced two hours later, he can never stand on his own.

This is SMA.

This is Lauren. She is Kyle's fraternal twin sister. She also has SMA. And a sense of humor. She is hilarious. She sings nursery rhymes and Disney show tunes. She can speak "Dora Spanish". She loves to eat melon, any kind of melon. And chocolate chip waffles. She wants to be a veterinarian when she grows up. She also wants to ride a bike and ice skate "when my legs get longer". We get to be the ones to explain to her that no matter how long her legs get, she won't be able to do those things. But she is special--besides driving her own power wheelchair, she can do things that other four-year olds can't, like competitively play Connect 4. She wants to go to Disney World and be a princess, but her favorite Disney character is Daisy Duck (awesome!). She can't crawl, turn over, lift up her head while on her tummy, or walk. She is in the 3rd percentile for her age, and her g-tube surgery is scheduled for later this month. She struggles to hold herself upright in her highchair, so her scoliosis surgical consult is scheduled for next month.

SMA stands for Spinal Muscular Atrophy. From the moment of conception, my twins' motor neurons weren't right. They were born crying and altogether pretty pissed off (the lighting made them look sort of bad, I don't blame them), but many newborns with SMA are born silent--these are the SMA Type 1's. They struggle to breathe, struggle to move. Mother Nature, and evolution, are screaming at them to scream! when they're born, but they are thrust into our world still struggling to take any sort of breath. Breathing requires muscles and motor neurons that do what they're supposed to do. Those babies don't tend to last long. Sometimes they die before they even get the bloodwork back with their SMA diagnosis. Other times, their parents are faced with life-and-death care decisions before their child can even have her first mall portrait taken. Other times, SMA babies seem completely typical until 6 months old, or 12 months, or two years. It's the "atrophy" in Spinal Muscular Atrophy that makes the parent suspicious that maybe there's a problem--these are the SMA type 2's and 3's (Kyle and Lauren are type 2). Even then, the prognosis is grim. Children born with SMA (non-type 1's) sometimes live until their teens, and in some cases even beyond their teens.

What lames the one causes the death of another. They're all missing the same motor neuron. There is no prejudice with SMA. And there is no cure. But if there was (but if there was!), the thing that cures the one can cure them all.

SMA is one of many muscular dystrophies. 1 in 40 of us are carriers. There is a screening test to determine whether or not you are a carrier. You can ask for the test, before or after you become pregnant.

I haven't worked since just after my twins were born. I left my career to schedule and keep up with regular appointments with the neurologist, pulmonologist, orthopedic surgeon, gastroenterologist, dietitian, orthotics clinic, wheelchair clinic, home health, and surgeons. I never managed to find the time to become PMI certified when my office was a cubicle, but given my experience sitting in waiting room after waiting room, I could teach volumes about "scope creep". I would give all my Six Sigma certifications, and more, to not know what I know about children and terminal disease.

SMA is life changing--not just for its direct victims, but for their parents and families. We are exactly like you. In fact, many of us had typical healthy children before we ever needed to know about SMA. If there was ever an ideal Project Manager, it's the parent of a medically fragile child.

That's all. I just wanted to tell you that. August is SMA Awareness Month. If you didn't know what SMA was ten minutes ago, you know now. It's all about the kids. Ask me anything. I've heard it before, and assuming you are not personally attacking my children, I won't take offense. I'd be happy. Not bothering to ask means that we're being ignored, and my children will not be ignored. Ask away, I'm thrilled to explain. I rarely get asked questions, other than "how fast does his wheelchair go?". (5.2mph.) Ask me. I'll tell you.

BlogHer '11 Recap

2011-08-10T22:39:00.000-07:00

With my first ever BlogHer experience under my belt, I am realizing how addictive conferences like this might become. I fail to see how a long weekend filled with inspiring women and a whole lot of drink tickets could ever be not fun. If I call it “an amazing weekend, filled with meeting great people and attending fantastic workshops”, will you hate me simply for being so uncreative and echoing the impressions pretty much everyone else has shared? Because it was all those things, and I can’t think of other ways to express it! This trip rates approximately fourth on the list I call Great Trips of My Lifetime. Preceding BlogHer ’11 on that list, we have my first trip to Disneyland when I was five years old, our English Premier League Soccer and Marbella Beach Extravaganza of 2003, and my solo vacation to one of my favorite cities in the world-- Vancouver B.C.--where I met a great many of my favorite hockey Twitter friends last year. But BlogHer ’11 is unique in one specific way for me—on none of those other trips was I given sex toy in a swag bag. Holla, BlogHer ’11!

I’ll agree to spare you the minutiae of such a long, kick-ass girl’s weekend, but let it be known that there is no better road trip partner than one Kelly Loubet. There is never a shortage of thoughtful and compelling conversation, giggle-inducing silliness, or 80’s arena rock ballad sing-offs when one is sharing vehicular space with Kelly. Sure, at 5am when we left my driveway we were both a little quiet—but as soon as the coffee kicked in, one of the most enjoyable road trips I’ve ever experienced was underway. I had forgotten what it was like to drive for more than fifteen minutes without bickering over DVD selection or 132 "are we there yet's" before making it to Gila Bend.

We spent Thursday night at The Big Toy Book party. I had my first opportunity to experience the Kinect on the Xbox 360 and was impressed (though this technology is fantastic, it does not involve a game controller and does require full use of the entire body). I also got to test out some of the new Leap Frog products, including the not-yet-on-store-shelves $99 Leap Pad, which looks like it could be a great tech toy for my four year olds who are advanced cognitively but have limited hand/wrist dexterity and strength. I would love for the twins to be able to test out this toy to see if it’s a worthwhile investment while we wait for the price of iPads to come down. But the best part is that the Big Toy Book party gave us large swag bags full of toys for the kids! The items that Kelly and I agreed our kids wouldn’t be interested in are resting in a “treasure chest” at our local children’s hospital.

Friday was the most fulfilling of the days I spent at BlogHer ’11. This day featured the extended workshop session for bloggers with special needs children. The two hour time slot was both spent discussing topics around blogging about our unique special needs circumstances and bonding over our general feelings and frustrations that so many parents of special kids share. If any of you blog about your special needs kids—even just in a private manner—I urge you to consider attending BlogHer ’12 next year in New York. The connections made in the room during the Special Needs mini-con, and the camaraderie and resources it will expose you to, will make it worth your time. I promise. My favorite speaker was Robert Rummel-Hudson, whose book Schuyler's Monster so far ranks as the most heartily funny yet tragic memoirs I’ve ever read. My twins’ condition is nothing like that his daughter suffers from, but I identified so much with his perspective and his sense of humor and I know it will resonate with many of you. I strongly recommend anyone to pick it up and read his story.

Saturday was a bit of a lazy day for me. It eventually ended with a perfect evening spent at the Aiming Low party and the CheeseburgHer event. If anyone knows how to party, it’s 3,000 women bloggers hundreds of miles away from home in a ballroom filled beds and all-you-can-eat McDonald’s cheeseburgers and fries. And—well, yeah--the booze is another story which I would share if I could remember it.

I have more thoughts to share regarding the special needs mini-session, which I’ll post in the next week or so. If you’re interested in reading what people have to say about that special needs session and you’re on Twitter—or hell, if you just want to Google it—follow #bh11specialneeds. Good people. Good stuff.

BlogHer is a website, but also an annual convention for female bloggers of all types. Next year will be in NYC the first weekend in August. Be there or be someplace less.

Word.

BlogHer '11

2011-08-01T13:21:00.000-07:00

I will be at the big BlogHer conference later this week. I have a long list of people who I want to meet up with, but if I am not aware that you're going you're probably not on it, so tell me!

I will be attending two private parties on Thursday night, and I hope to find my way to the workshop for parents who blog about their special needs children (I just can't remember when/where it is)--so far, these are my only planned activities, aside from enjoying a kid-free mini-vacation and gorgeous San Diego.

And I know that if I'm there for four days and never see the inside of Dick's Last Resort, I'ma be ticked off.

See you there?

Ice Skating

2011-07-25T07:26:00.001-07:00

I shot this a few weeks ago when the kids and I visited Ice Den, a local ice rink which was hosting a fantastically fun "Christmas in July" event.

For you families new to the wheelchair lifestyle like we are, here's your proof that someone in a wheelchair can have at least as much fun on the ice as an able-bodied person. I don't have better/more video footage than this, because the twins proceeded to passionately argue over who got to drive Kyle's chair. Lauren's chair has been broken for six weeks, so this is life until Permobil and the State of Arizona decide to employ some common sense and maybe just MAYBE stock parts locally and maybe just MAYBE not require a doctor's prescription for a bad electric cable to be replaced on a little girl's wheelchair. But anyway. View and crack up like I did.

Surprised they let wheelchairs on the ice? Don't be. The Zamboni® weighs way more, sillies.

5.2 MPH

2011-07-14T15:14:00.001-07:00

This happens all the time around here, but something about our favorite neighbor kiddo being a part of it today cracked me up. They cycled through the house a dozen times, and this is only one of them.

Pro Pack Mini Remote for Wii -- Two Thumbs Up!

2011-07-06T14:18:00.000-07:00

Kyle loves playing the Wii, but between the small size of his hands and the lack of strength he suffers from, thanks to his muscular dystrophy (SMA 2), I've often wondered if a video game system with a smaller game remote would be easier for him. Then one day I came across this mini Wii remote ($27 on Amazon, $35 at my Wal-Mart), and thought we would give it a try.

We like it! At first, he was hesitant to use it because of the black color (he's only four. He doesn't care much for change), but now he prefers it. I'm applauding this product on this blog without the manufacturer's knowledge or expectation for anything in return, but only to spread the word around the disabled community (or frankly, even the "parents of small children" community) that this mini Wii remote might be a good choice for you. The mini version has all the same buttons and functionality of the full sized version, and is accompanied by a mini nunchuk, too.

Since there is no way for one to visually compare the size of the mini version with the full sized version until after purchase, allow me to help:

What I've tried to demonstrate in the last photo is how not only is the mini version shorter, but it's also slimmer. The full sized version (white, in my photos) is not only longer but fatter than the mini version (black, in my photos). The mini version also weighs less--possibly because it uses alkaline batteries instead of the rechargeable Wii battery, which must weigh more. All in all, a great product for small hands or for people who struggle a little with the bulk and size of the standard Wii remote. Two thumbs up!

Save the Gonads.

2011-06-20T06:11:00.000-07:00

The reasons for the kiddo to have x-rays taken in his pelvic reaction are as serious as a heart attack--both hips subloxed 60+%.

But pardon me if I giggle at the "manhood shield" they use. The x-ray techs use it every time. I giggle every time. I hope they didn't notice me snapping this photo--how sophomoric of me!

"Bowling Alley" is not a girl named Ally who bowls--and other things the children learned yesterday

2011-06-14T18:56:00.000-07:00

The kids and I took a field trip to the bowling ally yesterday. It was a great opportunity to give the twins some frame of reference, since their only experience with bowling thus far has been courtesy of the Wii Sports game. But it was Jenna's second time in the lanes and not only did she have a blast, she was such a big help with the twins.

Yes, the twins bowled. Is there anyone left who doesn't know that kids in wheelchairs can bowl? Not after these photos.

If you don't eat your dinner, then...

2011-06-13T00:04:00.002-07:00

...you can't go out for a walk with us. That's right--I am my family's neighborhood park Nazi. You won't finish your Mickey Mouse chicken nuggets? THEN NO PARK FOR YOU.

The heat hasn't been much of a factor, because we go just before sunset. Last night I brought only the oldest and the youngest, while the middle child stayed home with Dad to think long and hard about what happens when you don't eat your "processed we assume it's chicken but we don't really know for sure but hey it's compressed into the shape of a lovable cartoon character" dinner.

I love those two close-ups up of Kyle and Jenna, a couple photos above. With the photo of Jenna at the picnic table, it's a rare snapped shot of how she really looks on any given day--plus, I spy a tiny bit of my mom in her face. And with the photo of Kyle, well, I am always a fan of a head shot of my boy.

Thumbs Up for the G-Tube

2011-06-01T16:28:00.001-07:00

With my first child, I would swell with pride when she would eat her grilled salmon and asparagus and brown rice without complaint and know that she was developing healthy eating habits. With Kyle? I swell with pride that we were smart and strong enough to finally agree to a g-tube so that he can reap the benefits of proper nutrition and grow up to be the big, strong boy he is genetically pre-disposed to be. (yeah, I don't like ending a sentence with a preposition, either. How else can I structure that sentence, though? Can't come up with anything which retains my original sentiment.)

The fasting on the day of g-tube surgery--and the 24 hours post-op--were tough, I'll tell you that. This boy who can never be bothered to eat much of anything on any given day was absolutely clamoring for Goldfish crackers and milk for the entire period when he could not have them. I imagine he is probably among the youngest of the Expert Guilt Trippers after this week's performances.

So yeah, it wasn't an easy week. But I can't get over this feeding tube and pump. Wonderful inventions. I could not be more thrilled. He is laying in his bed and barely even feels the filling sensation of fat and calories that I've programmed his pump to administer. I'm like a ninja mom, in that way. Or ninja chef? Or ninja enteral feeder, most likely. Whatever--I'm a ninja in any of these scenarios, and you won't see me arguing with that.

As if he wasn't already totally adorable before, now he refers to his button (the surgically-installed device in his tummy where the feeding tube plugs in) as his "door". As in, "Look--I have a door on my tummy." That's such a perfect way for a three year old to understand the concept and purpose of it, isn't it? I don't know how he came up with that, but what a clever boy.

Kyle turns four years old in four weeks and he weighs about twenty-three pounds. That's "0th percentile", at best. He is diagnosed "failure to thrive" going on about eighteen months now. I tried non-invasive solutions--DuoCal, Carnation Instant Breakfast, adding butter/oil/guacamole/cream cheese/peanut butter to his foods--and after so many months I had to finally admit that these strategies did not work for him.

I know it's only been a week, but my admiration for this g-tube is off the charts. I never realized how much time I used to spend a) thinking up things that he might agree to eat, b) begging him to eat things that I know he likes, c) watching him not eat things that I know are good for him, d) throwing away nutritious foods that he simply refused to consume, e) wonder how I can leverage dessert in a way which will make him eat any of his dinner.

Today? He had Doritos and chocolate ice cream. For breakfast. And I don't even care. I can ignore this particular battle because his doctors and I are winning the war.

Pneumonia and a G-Tube

2011-05-28T12:30:00.003-07:00

What a week! Kyle is home after spending eight days in the hospital--first due to pneumonia, and as he recovered from that, we decided to go ahead with his g-tube (feeding tube) surgery while we were there.

He was admitted with pneumonia last week after his O2 sat was down to 82% on room air and a chest x-ray showed how junky his lower left lobe was. We spent the first four days on Q4 respiratory treatments and antibiotics and no roommate--whee!

The next four days involved an upper GI, the g-tube surgery, and recovery. The worst part was dealing with his pleas to eat food the day of his surgery (he was NPO from 4am until essentially 2pm the following day). He woke from anesthesia begging for Goldfish crackers, and we couldn't let him have any. I may or may not have snuck him a few Goldfish here and there when the nurses weren't looking. It's ironic what an appetite the kid had on the day he couldn't eat due to g-tube surgery.

This was definitely our most pleasant hospital stay yet. He wasn't contagious, so we were allowed to spend time in the 4th floor playroom, the cafeteria, and even go outside and enjoy some sunshine. And it wasn't flu/RSV season, so the nurses were happy and accommodating and instead of impatient and understaffed. It almost felt like we were on vacation at a resort. Almost.

We made the decision to take him to the E.R. just in time--if we had waited another day or so, he would have been even weaker (he refused to eat for two days before) and probably would have taken a lot longer than four days to recover. It was so nice to know that discharge would be "in a day or two" rather than "in a week or two".

And many thanks to my friends who live or work downtown who kept me fed and kept me company during our stay!

Photos of our stay, in chronological order:

Day 1. Feverish and ill and feeling yucky.

He used to be quite fearful of elevators (those impatient elevator doors, ugh!), but he got really good at navigating in and out of them by the end of our stay.

Kyle and his lady poodle friend, Dorothy. The volunteers at PCH came almost everyday with a new therapy dog to cheer Kyle up.

Getting ready to watch Vancouver beat San Jose in Game 6 of the NHL Western Conference finals. Go Canucks Go! (He's also a Diamondbacks baseball fan.)

Kyle was understandably cranky and hungry on the day of his g-tube surgery. The anesthesiologist saved our sanity by putting versed in his IV--the kid went from ornery and fussy to totally high in about fifteen seconds. Hilarity ensued.

Taking a jaunt outdoors, one day post-op.

The view from our window of the tower that makes up the new and improved Phoenix Children's, which had it's ribbon cutting ceremony just yesterday. It's pretty rad.

Kyle hauls ass to the elevators the minute his nurse removed his IV and handed us our walking papers. He didn't need much prompting to get out of there...

Many thanks to the RN's and PCT's who made our stay a pleasant one, and much thanks to Dr. Weiss and his magic tricks. Kyle still talks about them. :)

Mom's Day in Pre-K

2011-05-07T06:29:00.000-07:00

Wednesday was "Mom's Day" in the twins' pre-k class. Such a sweet idea, and very sweet crafts and songs they had prepared for us.

Ask me later how much fun it is to go back and forth between two classrooms for two children who wish that once, just once, they wouldn't have to share Mom. That's the only bad thing about having them in two difference classes--but other than that, the list of pros is very long.

How did I forget to ask someone to take my own photo with my children? How lame. That was the whole point of the day!

Singing a Mom song with her class.

Kyle making a bracelet for/with me.

I finally brought brother over to visit sister's class. She was happy to see him and he was happy to be there (because that's where I was).

The special wooden seats with trays you see them each in are the Rifton chairs. I'd get a couple for the house if a) I won the lottery and b) if they were vertically adjustable. Other than that, those are some pretty nifty sit-and-play chairs which offer ample trunk and head support.

As You Wish--clutch when it comes to a gift for Grandma

2011-05-06T15:47:00.005-07:00

Before kids (and while still enjoying our full DINK status), I never had a hard time knocking it out of the park every year when it came to a Mother's Day gift for my mom. Something about having kids depleted my creativity stores (and, um, wallet--wave goodbye to gifts from the Coach Store from now on, Mom), so unless she has hinted that she's almost out of her White Diamonds or that her Consumer Reports subscription is up for renewal, the most obvious choice of gifts is something that the kids make at the local paint-your-own pottery joint, As You Wish.

I took them there last weekend while Chris was out of town. As You Wish survived. The children's clothes, not so much.

Happy children, pre-painting.

Jenna, shaking a paint bottle.

Happy Lauren.

Kyle, who has since had a much-needed haircut.

The finished product! We made a vase which reads, "We Love You Bunches!" along the top and the three kids' hand prints turned into flowers. I added four more expertly* hand-drawn flowers along the bottom to represent my sister and our husbands and me. This (sadly) might be our best As You Wish effort yet!

Coincidence?

2011-05-04T15:20:00.001-07:00

The twins got their eligibility/welcome letters from the Make A Wish Foundation on the same day as a Disney Vacation solicitation.

A sign?

Bringing Our Zoo to the Zoo.

2011-04-23T06:06:00.000-07:00

Three adults. Eight children. I'm not sure the Phoenix Zoo will ever be the same.

We met up with two of my favorite parent-bloggers (Kelly & Dave) at the zoo yesterday, bright and early. And to tell you the truth? I can't even tell you which exhibits we saw. I think there was an elephant? Perhaps a toucan was involved? All I know is that I sweat a lot, ate a ham sandwich, and tap danced around a spastic snake on the path to the zoo's exit. It's possible that there may have been some squeals, tears, begging, and popcorn on the part of the children in between our entrance and exit--I don't even know. It was a complete circus. But the bottom line is that we got out of the house, it barely reached 90 degrees, and the kids all had a blast with each other.

Note the fancy clamp-on umbrellas that my twins are sporting--courtesy of Grandma and JC Penney.

Now off to figure out what indoor activities we can do in Phoenix, since it doesn't appear that we'll be seeing high temps below 90 degrees Fahrenheit for about 6 months now.

Project A.D.A.P.T.

2011-04-21T22:57:00.001-07:00

Today, we were invited to the grand opening of a much-needed, long-awaited workshop for therapists to make custom adaptive equipment for kids with special needs.

Some background: Our fantastic therapists--all employed by Southwest Human Development--helped their company win an amazing grant from Humana last year. Their pitch included detailed plans about how Southwest would use the money to found an adaptive workshop as part of their Project A.D.AP.T. I spoke on their behalf to give testimony to how critical this workshop is, how the adaptations they have made for my home and for the twins have improved our daily lives (not to mention the kids comfort and skeletal health) immeasurably, and about how much more they could do for all these kids and families if they had the space and the right tools and supplies.

Six months later, the workshop has opened. It's not large, but they've used the space well and have used their grant money to wisely invest in some critical tools and supplies. Congrats, Southwest! And a huge thank you to Humana for your commitment to improving our community through such a grant, and for seeing the value in our therapists' efforts to help small children and their physical and emotional health and developmental progress. I already know that dozens/hundreds of kids will find huge benefit to Gayle's "Happy Chair" now that she can make them at will, and I can't wait to see what sort of custom foot rests she will concoct to work with the twins' high chairs.

Note: I am aware that my captions are not lined up correctly with my photos. I have no idea why this is, and after 20 minutes trying to fix it, I give up. Sorry, readers.

Thank you, Humana!

Lauren tried out one of several iPads purchased with the grant money--and on one of those nifty Gorillapod-type things. She firmly told me that she wants an iPad know. I firmly replied that she should ask Grandma.

A view of the main room of the workshop. Through the window in the background is a wheelchair/mobility seating evaluation room. Very cool. And check out that totally huge green band saw on the right! (I understand that it's impressive, if you know what a band saw is.)

Construction table, with foam and other supplies stored on the shelving beneath.

More shots of the work table, with examples of the types of adaptive seating that Gayle can make, now that she has the right tools. The white teddy bear is sitting in Kyle's Happy Chair. Gayle named it the "Happy Chair" because it was the only thing that made Kyle happy way back when. The name stuck, and now all her clients and coworkers call it by the same name.

The placard next to the Happy Chair.

In Kyle's left hand, you'll see a red button. It's attached via a black cord to a Winnie the Pooh automatic bubble blower. It's an adaptive switch that therapists commonly use for kid's toys and electronics to allow a child with limited strength/mobility to access the device. Kyle is obsessed with buttons. Lauren is obsessed with popping bubbles. It's like yin and yang, but in a good way.

I Shot this Video--a.k.a. My Ticket to Parent Hell

2011-04-02T18:01:00.002-07:00

I have had this conversation three times today:

Me: You can have a Hershey's Kiss after you take your antibiotic.

Boy: I want a Shees Kiss now.

Me: You mean "Hershey's Kiss".

Boy: (crying) But I want a Shees Kiss, too!

Me: What are you talking about? You can have a Hershey's Kiss, but not 'til after you take your medicine.

Boy: Shees Kiss! I want one, too! ::sob::

Oh. So, this is their first exposure to a Hershey's Kiss, and he thinks it's a Her-shees Kiss. He's waiting for me to give him a His-shees Kiss, I guess.

So finally I was able to reproduce a variation of this conversation with my trusty Flip. He cries at the end. I knew he would and I pretty much egged him on. I am terrible.

Successful Saturday!

2011-03-28T22:35:00.001-07:00

The Phoenix MDA Muscle Walk this year was so great. It started earlier in the day, so our on-site meal was breakfast (thanks, Fresh N Easy!) instead of lunch (lunch didn't go so well last year). The twins did me proud, navigating their chairs in all the crowds. It makes sense that for three year olds, navigating a bright and sunny outdoor crowd of hundreds of people might be taxing on the brain. And it really is.

I am fully convinced that we have conditioned them to be so aware of their surroundings and so conscientious of the safety of pedestrians that when they get strapped into their wheelchairs in large crowds, it overloads their senses after an hour or two. Do you remember how you felt when learning to drive a car? There's the unfamiliarity of a car you've never before driven, those vain feelings of hoping that you "fit in" and that the others on the road don't realize that you only have your learner's permit, and that serious-as-a-heart-attack awareness that you are directly responsible for the safety of others simply by not straying from your lane.

Yeah, you were fifteen years old back then. These kids are three. Years old. And one single hand-talking, backwards-walking woman stepped in between Lauren's wheels and stumbled into her. Lauren melted down because of it. See, ordinarily I read her the riot act when she runs into stationary objects, but this woman was a complete dolt (sorry, lady--I'm so glad you were there to support the cause, but really), and so Lauren reacted appropriately--she ran over a woman's foot, and so melted down and sobbed uncontrollably for ten minutes. From this experience I learned that maybe I've been a little hard on them for their driving mistakes. Honestly, it's just that I know they have such mad driving skills that I want everyone to be a witness to them--but no amount of discipline or self-satisfaction is worth how completely horrible I felt when Lauren took that accident so personally.

I can mostly control my children in their ridiculously expensive wheelchairs. I cannot control the rest of you. I am nearly as inexperienced with dealing with the oblivious public as my preschoolers are. I'm working on how to handle this stuff. All I know at this point is that next year's walk will go even better than this year's. Team Double Trouble raised lots of good money for the MDA, and we had a blast at the Walk. That's really all I care about.

Photographic evidence of the morning's events follow. Phoenix locals, please note the last few photos with local news station celebrities. I'd hate for anyone to think that we're not a big deal and that people know us.

Muscle Walk 2011

2011-03-25T21:20:00.007-07:00

The annual Muscular Dystrophy Association Muscle Walk is being held tomorrow in Phoenix. This is the day when I wake up the four other members of my family at 0-dark'thirty to head down to Tempe by 7:15am to join a couple thousand other "walkers" (technically speaking, many of them are "rollers") to raise money for the MDA.

Did you know that the MDA offers free clinics staffed with some of the best neurologists, therapists, and wheelchair/medical device experts ever assembled so that those with muscular dystrophy can consult with experts on their care? No muscular dystrophy case is the same, so there is enormous value in having access to these centers of excellence where one can be confident in the advice given for our varieties of medical needs.

The MDA also funds critical research towards treatments and cures for the 40+ types of muscular dystrophy. They provide opportunities to places like Harvard, Yale, Emory, Johns Hopkins, UCLA, Temple, St. Jude's, UCSD, University of Michigan, Laval University (Canada), and University of Rome (Italy) to CURE. THIS. DISEASE.

The MDA also provides my family with a local, tangible, helpful support system consisting of compassionate MDA staffers and other MDA families where we have found community, advice, and moral support crucial to our financial (and mental!) stability. If my three year old twins had to be diagnosed with a terminal disease, we couldn't be luckier to find ourselves with such an amazing extended family like this.

I don't expect to raise a ton of dough for my MDA. But do me a favor and click this link and read our story. If you're curious as to how muscular dystrophy affects my children and my family, click here and here and here. Donate if you feel compelled, but if you can't right now, that's okay--I have two other fundraisers later this year in which you might choose to participate. :)

Lastly, our family was featured on our local Fox news broadcast earlier this week. The focus of the news story is on the one year anniversary of "Obamacare" and how it has positively affected local families. I tend to keep my political opinions to myself, but suffice it to say that the segment made the kids seem almost as charming as they are in real life. :)

I still wouldn't call myself a "writer", but...

2011-03-21T08:35:00.003-07:00

I like a challenge. I enjoy entertaining people. I don't mind being a parent. I don't have a day job. Or a night job. I know my way around a keyboard. For all this, I was invited to sign on as a weekly contributor to a friend's blog--a blog that gets thousands of hits per month, woot woot!

The content I publish there is not like the content I publish here--my Bahamas blog is essentially an open letter to my sister on how her nieces and nephew are doing (you're welcome, sis), whereas my column at Everyday Childhood is more a top-down look at parenting with a sense of humor. Except by "top-down", I'm referring to peeking into my life from above--I don't actually take my top off, you weirdos. I save that for a different kind of blog. (snort)

My words at Everyday Childhood run on Tuesdays--because in the wide, wide world of the interwebz, Tuesday is known as "Twin Tuesday", and I have twins. So far a lot of my posts there have not a lot to do with twins. But I do have them, and so I staked a claim to Tuesday over there. I do my best to publish my Twin Tuesday stuff by the time I'm finished with my first quiet cup of coffee of the morning.

I am not employed by them, I receive no compensation for my writing, there are no ads on the site. I participate for my own satisfaction, and just to be read, quite frankly. Ah, though sometimes Kelly buys me a cup of coffee. I reserve the right to recycle a post from here, or to use a post I've published here to kick-start a more embellished post there, so you may encounter some familiar stories as time goes on. If you find anything offensive, unpleasant, or otherwise not entertaining, well--in the words of Shaggy--"it wasn't me". You can access my archive there by clicking here.

We're Going to the Zoo, Zoo, Zoo--How About You, You You?

2011-03-17T16:02:00.000-07:00

I took the twins to the zoo on Monday to kick off a sickly-yet-epically-fun week of Spring Break. It was gorgeous weather--the temp was about 68 degrees F that morning. It was our first trip there with both wheelchairs, and it went pretty well, actually. The twins gave up and asked for driving help when we found ourselves in crowds, and then as the morning wore on and they grew a little tired, but overall I am very proud of them. I am proud of Jenna, for hanging in there with us, keeping helpful and upbeat, and not getting impatient. I am proud of all the kids we met at the zoo, who kept their hands off the wheelchair controls and stayed friendly and respectful. And I give a big "thumbs down" to the zoo's policy to allow families on bicycles on the property. I have nothing against bicycles, but I do have something against the heart attack near-misses I endured as my children attempted to avoid getting run over by the same damned family on bicycles. Poppycock!

The highlight of the day was when I realized the twins can't seem to pronounce "flamingo". Even Lauren, who's verbal skills are sometimes better than my own, says "fum-a-lingo". Flamingo. Fumalingo. This will never not be funny.

Kyle was not feeling like having his photo taken. I have no photo of him at the zoo, beyond the last shot which mostly serves simply as evidence that he was present.

Here, the girls pose on the zoo's little Mexican cobblestone street that's supposed to teach us that Mexico has real animals (and not just drunk American tourists).

Lauren poses outside the tortoise exhibit.

Lauren demands I snap a pic of her giving a "silly face". Her sense of silly has a ways to go, but "A" for effort, Padawan.

Me: Yay, let's pose for a pretty picture! Them: A BUNNY RABBIT JUST RAN INTO THE BRUSH. Me: I really can't compete with a live animal running loose in a zoo.

Born to Run. phhhtttt NOT. But kind of.

2011-02-14T14:27:00.003-07:00

I hate exercise--just ask my doctor. Since I was 16 years old, he's begged me to do any sort of cardio. I sit there on his paper liner and squint my eyes and jut my chin out in thoughtful, optimistic consternation as he bullet-points all the reasons why people would bother exercising and agreeably nod my head. And I still don't get it. Why run when you can walk? Why walk when you can drive? Am I right?

Usually I hate moving my body at all for mostly any reason, unless there's hooch involved in the before or after. And I'm not competitive--oh God no. But I started running last year. You could say I've channeled my inner Forrest Gump, maybe. But the best part is that I've found an amazing cause to run for--who could say no to respite, palliative, and end-of-life care for little kids and their families? London has it. Vancouver has it. How many cities in the US have this? Two. And one of those places is here in Phoenix. It's called the Ryan House, named after our personal friend Ryan. His family built this amazing facility in downtown Phoenix (adjacent to St. Joe's) from the ground up. Families of critically and terminally ill children from anywhere can come to Phoenix and reserve a stay and enjoy a well appointed room with world class medical and respite care for their child--for free.

If you've been blessed with such an extraordinary child, you know how time consuming and stressful it is to be at the beck and call of pulse oximeters, feeding pumps, body turning schedules, suctioning needs and more. If any of you families with medically fragile children visit Phoenix, you can contact the Ryan House in advance to take care of paperwork, and then enjoy your time here as a family, worry free. The nurses at Ryan House are the best of the best--and most of the doctors are the doctors we've chosen for our own kids, before the Ryan House existed. Everything about the Ryan House is world class, believe me--even the playground. What--you don't think a playground can be world class? Go visit. You'll see.

And this is why I am getting off my lazy, self-centered ass to run on 5 March 2011. That's right--I'm competing. I'm running a 5K to raise money for Ryan House so that more families can take advantage of this amazing home and amazing nursing staff. If you happen to be a runner, there's also a 10K and a half-marathon--it all takes place in Scottsdale in March 2011. If you're not a runner, then give me your money. I challenge anyone who reads this to donate $4 to my cause. Sure--$5 would be nice, but that somehow sounds like a lot more than $4. If the 64 subscribers to my blog each pledged $4, that would equal....like, a whole lot more money than this liberal arts graduate can count.

My family qualifies to stay at the Ryan House because two of my three children have a terminal disease. So, I run for my kids, too. I also run for myself, to prove that I can do something amazing. The last amazing thing I did was to mail merge 264 address labels on an Excel spreadsheet. Before that? Well, I went to Costco with three kids, by myself, on a Sunday--omg stop clapping, it's embarrassing. But to be honest, I haven't done anything else so amazing since carrying twin babies to 36 weeks gestation. After being on bedrest for 11 weeks. Uphill. In the snow. Both ways. (the clapping, though! knock it off!)

Runners--learn more and join Team Double Trouble on March 5.

Readers--send your $4 this way. And mention Team Double Trouble in the notes.

"Meh", you say. I hear you, I hear you. You need something compelling for your $4? I present this. But if you shed a single tear, you owe my team $25. (not that I could put a dollar amount on a baby's life. I just mean that certain stories compel people, and it's all for the Ryan House anyway.) This family--this mother--so encapsulates what it's like to lose a child--and a compassionate environment such as The Ryan House can be a key emotional component to coping with such a tragedy. Donate for her. Her. I've never met Faith. But I run for her. One day I hope to meet her. She's amazing.

And then go kiss your kids. Because nothing else matters. I don't care whether you throw your bills at me or not--just go kiss your kids. If you don't have kids, kiss your dog. And if you don't have kids or a dog, well, kiss a grapefruit (I don't know, what do you kiss in this situation? My grits? My ass?)

Word.

Wanted: iPad App Writer

2011-02-11T22:26:00.000-07:00

Do you know how to code an iPad app? Do you know someone who does? Do you network with people who might? I need your help. Spread the word.

The twins' Early Intervention therapists first tapped me last year to speak on their behalf to win a huge grant to supply their "workshop"--and by "workshop", I mean an until-now nonexistent place for occupational, speech, and physical therapists who serve developmentally disabled infants and children up to age three to adapt and store toys and devices for young children who are so developmentally behind that they cannot thrive without the special assistance that knowledgeable therapists can provide.

Other than my children, nobody is more important to me than the individuals who serve and support my children.

So last Fall, I drafted up index cards with my speaking points and ironed my clothes and put on lipstick and went to a ballroom at the fanciest resort in town to speak on behalf of our therapists. I told those executives and community leaders what these therapists do for my family--adapt our high chairs to improve their spinal posture, use common office supplies to separate the pages of their books so that their weak hands can more easily turn pages, tip me off on the latest toys and educational software that might meet their needs, suggest innovative ways for the twins to operate their electric wheelchairs, etc. And our therapists could be even more helpful to the community if they had some space to store their supplies, company money to purchase the incidentals, tools to help them cut plastic and foam to form adaptive seating for so many young children, and tablet PC's to introduce their young clients to the limitless world of educational technology!

And then a month later I was invited to the awards dinner. I had nailed it--my presentation won the $100k grant for our therapists. I drank some free wine and ate a LOT of bacon wrapped scallops that night. I shook a lot of hands and I suspect caught a lot of germs. Eh, give and take.

So, my therapists now have a space for their workshop. Big, expensive tools are on order. Other supplies have been delivered--including iPads. They even got some iTunes gift cards, which has been nice, so that they can browse the App Store and determine what kind of apps are suitable for their young clients.

In general, iPad technology is amazing. It's even more amazing from the perspective of a parent of children who have limited use of their arms, hands, and fingers. And I know for a fact that Apple doesn't know how useful their technology is in the hands of the disabled community OR ELSE THEY WOULD OFFER DISCOUNTS OR INCENTIVES TO SCHOOLS AND CHARITABLE ORGANIZATIONS WHO WISH TO BUY THEIR PRODUCT.

I digress. Back to my point--our therapists now have iPads in hand. They've discovered some apps that will perfectly meet the needs of some of their young clients--but other clients, not so much. They wish to meet with someone who can write apps for them. These would be simple apps--imagine the finger dexterity of a patient with cerebral palsy, for example. I am talking about creating apps that are cause-effect heavy.

I don't know how complicated it is to write an iPad app, but if you know how to do it and are willing to donate your time, this company has a 501(c)3 tax ID, so I imagine you could even write off your resource hours. My therapists have specifics around what they're looking for in an app. Ping me so that I can put you in touch with them. And repost this to any online community that might be able to help us.

L-A-U-R-E-N

2011-02-01T20:05:00.004-07:00

I have no doubt that a majority of three year olds can write her own name, but this particular three year old has certain fine motor skill deficiencies that prevent her from pushing some kinds of buttons, holding a telephone to her ear, or even grasping a pen (or so I thought). I wasn't sure if she'd ever be able to express her name unless it was by using a touch keyboard.

Behold. Lauren:

Pretty sure she's practicing for when she's elected President of the United States of America. Those folks have to sign mad numbers of autographs, yo.

Sick Kids--Bah!

2011-01-31T23:12:00.005-07:00

The twins are sick. One woke up with vomit in her hair and the other has been fighting a cough and congestion for a couple days.

I sent a detailed email to their pediatrician outlining their symptoms and my impression of what might be going on, and then ran the dishwasher, did laundry, jotted down the milligrams of their meds that I can never remember, and packed their bipap machines, circuits for Cough Assist, and my hospital bag while I waited for her to reply. I thought about this HUGE hockey game I have coming up on Wednesday and how I would get coverage at the hospital so that I could sneak away to see this game I've been waiting for for seven months. And I thought about Jenna's birthday on Thursday and how I hope we're all healthy and at home to make the day special for her.

The doctor said just hang out and wait. So, we wait. I hope we're waiting for them to get better. But we just did this same dance in November, and it ended up with a scary crashing at urgent care, a pricey ambulance ride, and what turned out to be simple pneumonia. I don't know what to expect this time, but I guess we're ready for it.

That's the wonderful thing about living in a warm climate and having a bit of luck with keeping the kids healthy--I haven't had to endure the experience of serious illness very often. But the twins are at high risk for respiratory infection, and so it goes: prepare now, or scramble later. This is the price we pay for not homeschooling them. Schools have germs. This is flu and RSV season. I've been anticipating serious illness for months. We've been lucky.

Lauren hasn't thrown up since the dark hours of this morning. Kyle continues to require the Cough Assist and suction every ten minutes or so. We'll see what tomorrow brings. My bag is still packed, just in case. I *was* a Girl Scout ("be prepared") for twelve years, you know.

Okay, I've no photos of sick kids to share. I hate to leave a blog post without a photo, though. How about I highlight my love for Canada with this pic I took of Kyle before school last week? I love Canada so much that I force my not-old-enough-to-read child to prance around as it's poster child.

What's in Your Fruit Basket?

2011-01-26T11:14:00.002-07:00

Sometimes I think what's in your fruit basket can say a lot about a person.

Other times, I think I just like lemons and garlic and cupcakes.

Ah, so THAT was the last dollar I ever gave to Susan G Komen

2011-01-24T22:07:00.002-07:00

Hey, so the Susan G Komen For the Cure foundation is pretty possessive these days. They've trademarked "for the cure", and apparently any charitable cause--including smaller, local causes that benefit it's own foundation--who uses "for the cure" in the title is a prime target for a lawsuit. (I also heard that "for a cure" is also their trademark, but my Google skills prove insufficient to prove or disprove this assertion.)

Visit msnbc.com for breaking news, world news, and news about the economy

Note: I am all for raising money for breast cancer research, support, and awareness. There truly is no better cause. I hate cancer, especially breast cancer. Just like most of you, I know people directly affected by this hateful cancer and I normally support every effort to raise money and awareness for it. But I (among many) take issue with this lawsuit, for the following two reasons:

1. "The foundation has been around more than 30 years. It has a stellar reputation. The foundation believes it is taking the necessary steps to protect itself and its donors." Really? Because there is no possible way that there is any other cause worthy of using the outrageously creative and unique "for the cure" tagline? And because anyone not living under a rock doesn't already associate "Susan G Komen" with breast cancer, and it's efforts to cure it? How many of my donated dollars were spent on the salary of the Susan G Komen attorney I saw on NBC tonight for a 45 second sound bite? You think this is what Suzy Komen would have wanted? To spend research money on lawsuits to "protect" the foundation's reputation? Your cause, in and of itself, is your reputation, people. So, I almost don't care that you claim to have provided $200MM to research and advocacy--the Susan G Komen Foundation has also spent half a million dollars on legal fees. $500k is a lot of money to spend to sue people who also wish for a cure for something terrible, don't you think?

2. "For the Cure"--wow! That's some piece of literary genius! Who else could ever have come up with such a catchy phrase? Surely parents of certain terminally ill children--50% of whom die before two years of age from a genetic disease for which there is no treatment or cure--could never have thought up such a sophisticated slogan. Intellectual property, indeed. Eh, I guess breast cancer called shotgun first, so the rest of the diseased community is challenged to come up with it's own slogan. I shall suggest we all consider: "race for money which may or may not eradicate abc disease", "hoping for somebody to fix xyz disease", and "together, we can raise enough money to [synonym for a cure] defg disease".

I realize I'm channeling my inner Dr. Phil here, but are you kidding me? This is the most ludicrous, asinine, moronic waste of time and money ever. How are we not focusing on the main goal of curing such a wasteful, tragic disease? Keep your eye on the ball, and all that?

This post should have taken me 20 minutes, but it took me 90. I had to step away to feed my twins, put them each on the cough machine, suction their secretions, and administer their study drugs. Nobody deserves breast cancer, but nobody deserves to be born with a "if they live past age two they'll be lucky" sentence.

I believe that the Komen family truly has the community's best interest at heart, and I get that with a large organization there are sometimes large expenses.

But give. Me. A fucking. Break.

What am I missing here? Is there a key part to this story that I'm missing? Anyone want to argue with me? I'm open minded--prove to me that I'm being an ass in a logical, respectful fashion and I'll wash your car for a year*.

*not really.

Disney in the Hizzey (on Ice)

2011-01-24T13:41:00.001-07:00

My mom and I were brave enough to take three young children to a 7:30pm on a weeknight presentation of Disney on Ice. We called in advance to secure handicapped accessible seats, to no avail. We called our local MDA office to see if they had any ideas, and they called around and hooked us up with a point of contact at US Airways Center. Boo-to the frickin-yah!

Let me take a timeout right this minute to give props to Marlo and Ashish with US Airways Center. They don't know me from Adam, but they took the call from the MDA and promised to take care of us and they did. Upon arrival, they traded our regular seat tickets for wheelchair accessible tickets on the spot, and then personally escorted us to our seats (this is a long process, considering the respective ages of my wheelchair drivers). When the show was over, Ashish came to us to personally escort us to our car in the garage. I didn't pay extra for this. I didn't expect this. But I appreciated it so very much. Well done, US Airways Center--well done. (And I didn't even have to flash my US Airways Mastercard monthly statement or my husband's Dividend Miles Gold membership card.)

Grandma was a sucker and bought light-up spinny toys for the kids.

I love this photo. I don't have many pics of me and my mom, and even fewer pics of me and my mom and my kids.

Oh yeah--there was something going on down there on the ice, too.

All the Cool Kids Call it "The MIM"

2011-01-19T22:01:00.001-07:00

We spent a fantastic morning at the Musical Instrument Museum in Phoenix this week. I never knew how awesome this place is--it's enormous, kids under age 6 get in free, the cafe is charming and the technology is way cool. Target is the primary benefactor of this amazing building, and it's only the second of it's kind in the world (so I'm told).

Jenna got every penny's worth out of her visit--she put on her headphones and turned on her narrating device and we barely saw her again. At almost 7 years old, she wandered into the Europe gallery and was entranced with every display.

The twins had a TON of room to roam--the MIM is very wheelchair friendly. The twins didn't have much tolerance for the headsets, so they mostly cruised around while using their "outdoor voices" to ask where they might find a French horn. I'm not even sure how they know what a French horn is, since I don't play it and we don't own one and Elmo doesn't mention it on any of the Sesame Street DVDs we have that they've watched one thousand two hundred thirty three times. Alas, there was more than one French horn in the building, so their needs were satisfied.

Blogger is challenging me tonight, so I can't seem to articulate an acceptable divide between my "kids at the museum" pics and "musical instrument porn" pics (the string bass reaches from floor to ceiling!). So without further ado, just go ahead and enjoy.

I don't have any pictures of her here, but we enjoyed our visit with my friend Kelly--have you been to her blog? You should. Go. Now. Here's the one pic she managed to snap, of her girls and me and Jenna and I think the twins are in there somewhere. It's always crazy hectic when we combine our five kids anywhere, but Kelly, we need to do this more often!

This place is big enough to accommodate probably a dozen (or more?) of our kids in wheelchairs and strollers. The elevators weren't large enough for two of my (overly large) chairs, but that's really my only critical observation of the place. The outdoor xeriscape garden was lovely, peaceful, and spacious. The price was reasonable ($15 for adults, $10 for kids above age 5), and the instruments were remarkable and numerous. I can't wait to go back alone, without the kids, so that I can actually appreciate each exhibit. ;)

One more--this just made me giggle.

Their Last Bath Together

2011-01-16T19:20:00.004-07:00

Sure, they've been fighting over bath toys together for ages and driving me crazy over it, but this time their high chairs barely fit into the tub at the same time without rubbing on or chafing the other's legs and feet.

Bye bye, tandem baths.

Ho Ho Ho!

2010-12-25T12:52:00.008-07:00

Santa brought the children iPod touches this year--remember back when I was pining for them to have these? You'd think that's the only gift they opened--I've never seen them so silent and absorbed in what they're doing.

So far, I've downloaded Angry Birds, Doodle, Handy Manny Workshop, Itsy Bitsy Spider, Preschool Connect the Dots, Talking Tom Cat, Tesla Toy, Toddler Fun Phone, Toy Story 3, and Wheels on the Bus. They all seem pretty easy for them to figure out, to varying degrees. Any other suggestions for educational apps for a six year old and smart three year olds with limited fine motor skills?

Note: I'm particularly interested in musical instrument apps. I'd like for them to be able to tap on piano keys or strum guitar strings. I know a piano app for iPad exists, but I can't find the magic words to search for anything that works for iPod touch.

Gingerbread in the Hizzouse

2010-12-20T22:33:00.002-07:00

Today, the Byrdlets and I visited an amazing gingerbread house exhibit at the JW Marriott. The theme was Willy Wonka and the Chocolate Factory, and it knocked our socks off. Jenna happens to be an avid fan of the old Willy Wonka movie, and the twins are just fans of sweet things, so everyone was cool with this field trip. The exhibit will be displayed in the lobby there until January 2, 2011, so if you're in the Phoenix area, consider checking it out!

The chocolate river is in there somewhere.

Violet!

Miss Sassy if you're nasty.

The boy just smiles too hard to open his eyes anymore. He's that happy.

Oompa Loompa time.

How to be The Best Children’s Hospital Roommate Ever!

2010-12-07T21:34:00.000-07:00

I recently had the pleasure of a hospital stay with a sick kiddo. Phoenix Children’s Hospital is finishing the construction of an enormous, amazing new facility which features private rooms—but until it opens next year, we’re stuck in their old building where we have to share a room with another patient.

And now that the kiddo is healthy again, I’ve realized that it wasn’t so much a ‘hospital stay’ as it was ‘research for a great blog post topic’. You think I was just sitting around worrying about my child’s health? Ppsshhaw, please. No, I was seething at the behavior of our roommates and writing notes to help all of you become The Best Children’s Hospital Roommate Ever! Here are the rules:

1. Let your child dirty his diaper and don’t bother changing it for a while. And when you do, let it sit on the floor for at least an hour. Even strangers 4 feet away from you and separated by a thin rainbow printed curtain understand what a pain it is to walk said dirty diaper ten feet into the bathroom.

2. Engage in “I love you. No, I love you. No--I love you!” talk with your child in the middle of the night in a non-whisper voice. And you know what? Don’t feel bad about it at all. Again—your roommates understand the need for round-the-clock shmoopy talk with your kid and they are probably happy to give up their precious few minutes of sleep while they enjoy it.

3. Allow your friends and family to call the hospital room phone at midnight. Definitely talk about a missing receipt and going to church—its your prerogative, after all. It’s not like any sick children and their families are trying to sleep or anything and THESE ARE IMPORTANT TOPICS TO COVER WITH YOUR LOVED ONES. AT MIDNIGHT.

4. Let your kid scream at you belligerently during all his waking hours while he beats his mylar balloon to and fro around the room at a decibel level that pains anyone else in the room who might have sensitive ears (due to ear infection—this IS a hospital, after all). It’s his world—we’re just living in it. We know this and we love you for it.

5. Moms--let your husband meander around the place in his wife beater shirt, which nicely shows off the naked girl tattoos he sports from shoulder to elbow. On both arms.

6. Watch a lot of Telemundo. Loudly. Todo el día. Cada día.

7. Permit your child to wet-sneeze all over the place without covering his mouth and nose. Tip: This rule is particularly effective when your child’s roommate is at high risk for respiratory complications. We looove airborne contagions—and not just so that we can spend more mornings enjoying free coffee from the Kohl’s coffee cart!

That’s it. That’s all I got. My kid had pneumonia and we were miserable there in the hospital for a few days and life sucked. Other than the kiddo recuperating much faster than normal, the best part of the stay was the ambulance ride over.

I adore our hospital and the staff is world class, but a sick kid blows big hairy goat balls and no amount of amenities or sense of humor can make that better. No—actually, that’s a lie. Amenities and humor can totally make it better. Which is why I am already in love with the new Phoenix Children’s Hospital (which has yet to open) and why you love me.

Wheelchair Life: an Update

2010-12-06T12:29:00.004-07:00

The twins are doing wonderfully in their power wheelchairs. Their teachers report that they continue to thrive, in the social sense, with their able-bodied classmates and that their driving skills in the three months since they started preschool have improved significantly. [Insert beaming mother here.]

Our driveway has a slight incline to it. I never noticed it before, but when the twins unload from the van in the driveway, they race up to the garage door and squeal, "Time to slide!", and then burn rubber at mach speed all the way down to the sidewalk, where they screech to a halt. It's pretty hilarious--and I now have black tire marks on the side of the driveway where they tend to do this. Heh heh.

Last Friday the twins did not have school. Instead, I took them to a nearby outdoor shopping mall in the non-busy morning hours. The idea was to give them more practice driving in public places--and to hopefully give the public some exposure to my fleet of wheelchairs, in my ongoing attempt to socialize our neighborhood to our unique circumstances. My master plan on Friday was working just fine until the twins and I were crossing a small street within the parking lot. A grandmother-type (driving a white Saturn Vue, Arizona tags 911-LVE, in case you know this person...) sped over a speed bump, stopped abruptly for us at the stop sign, then rolled down her window and yelled at me to get the three year old toddlers operating their wheelchairs at a perfectly acceptable speed to move faster. To say that I was livid would be an understatement. This woman serves as a reminder that no matter how wonderful life can seem sometimes, there is always a cruel bitch (who probably kicks newborn kittens in her spare time) to bring us back to reality. The twins didn't notice the hostility, so I elected to silently wish her very, very bad karma and then move on with our shopping trip. Here they are driving away from the kitten kicking lunatic a few seconds after the altercation:

Yesterday was an interesting day, and notable for two things:

1) Lauren crashed into the billiards table at high speed in her wheelchair and moved it halfway across the room. She was extremely upset at the accident and at first we didn't know what injuries she might have caused herself. She's fine today--there are no signs or symptoms of fracture. But she moved a regulation sized pool table with a two piece slate, ball return--all heavy features--five feet across the floor with her knees. I guess milk does do a body good...?

2) We went to Zoo Lights at the Phoenix Zoo yesterday evening! Lauren wasn't interested in driving herself within the zoo after her accident, so I just dragged the baby stroller with us and used that instead. It worked out well, though, because it was a school night and there wasn't a ton of time for lollygagging with three year olds in wheelchairs (and the usual troublesome, oblivious public) with an early bedtime in mind. In any case, the kids had a blast. It was a very warm night--a fabulous 64 degrees F within the zoo--and it wasn't nearly as busy as the zoo lights we've attended in previous years. I hope the kids grow up having fond memories of Zoo Lights at the Phoenix Zoo every year.

I hope life is merry and bright this holiday season for all my readers!

This is Why I Walked.

2010-11-22T22:37:00.006-07:00

One upon a time, a beautiful newborn boy was diagnosed with a terminal disease. His parents did everything in their power to advocate and care for him, so despite the horrific rate or mortality, he survived longer than many with his disease. When he was two years old he was granted his Make A Wish trip. For nearly a week, he and his family—including his newborn baby sister—enjoyed Disneyland in that magical way to which any family with young children can relate. Last week, Jonas and his family returned from their amazing Disneyland vacation. A couple days later, Jonas caught a cold. It quickly settled into his lungs and he became critically ill. On Thursday, November 18, 2010, Jonas Coleman passed away. A week after his Make A Wish had been granted and a week before his third birthday.
The day after Jonas died, my own three year old baby girl found herself in the hospital. She’d had a cough for days before that, but after lots of albuterol and Cough Assist she seemed to be on the upswing. In the end her cries of an earache convinced me that something was really wrong, so I casually drove her to Urgent Care where she began vomiting, aspirated, and her O2 sats plummeted while her heart rate and respiratory rate skyrocketed. We were only in the building for three minutes when the staff called an ambulance to take us to the hospital. Lauren improved quickly the next day—despite fighting what we know now was pneumonia—and we don’t know why she got over it so fast. But her timing was uncanny, given Jonas’ passing just the night before.
These kids are so fragile when it comes to their respiratory systems. We do everything we can to keep germs away from them while allowing them to live full lives, but we can’t shield them away from all of the bad stuff all the time. It’s a fine line, and as a parent it’s an exhausting one to manage.

This is why we walked yesterday. Lauren was sick in the hospital for the 5^th Annual Walk N Roll To Cure Spinal Muscular Atrophy. Jonas had SMA. Lauren and her twin brother Kyle have SMA. And Jonas’ newborn sister, Maggie, has SMA. I once heard some expert say that SMA is the most common rare disease they’ve ever seen, and my own experience supports this. The twins were diagnosed with SMA two years ago. I can no longer count or remember the names of the babies who have died of SMA since then. For a while I could, but the volume of souls affected by this terrible disease is so high that even I can’t keep up. All of these kids, individually, are why I walked yesterday. Our Team Double Trouble raised over $2,000 for the cause, and my personal friends contributed raffle prizes which collectively raised another $500+. I used to think that SMA only affected us—our family, our kids, our pocketbook. It felt so isolating back then. Isolation in such a severe situation was overwhelming. But it feels good to know that we’re raising awareness in a big way—and raising money for the cause--and so MUCH money, and in such a rough economy. Thank you from the bottom of my heart, everyone! xo

Walk N Roll 2010, Baby!

2010-11-16T16:20:00.005-07:00

This Sunday will be our second year raising money for the Families of SMA Arizona Walk N Roll. FSMA serves as a critical support system for families facing the devastating diagnosis of Spinal Muscular Atrophy--they fund critical research for treatment and cure for this type of muscular dystrophy, which affects newborn babies the hardest. Half of babies born with this incurable muscular disorder die before age 2.

When strangers strike up a conversation with me about the kids and their disease comes up, they usually ask me if they can walk--they are in wheelchairs, so while I think the answer would be obvious I still find the patience to explain that not only can they not walk, but they don't have the muscle strength to sit up, roll over, lift their arms to comb their hair, or cough. What they lack in physical strength they make up for in charm and intelligence, but the fact remains that they will live their lives dependent on wheelchairs and caregivers and that just sucks.

Families of SMA was a key resource for us when the twins were first diagnosed with this terminal disease at age 16 months. FSMA sends "newly diagnosed" care packages to new families, put us in touch with other local families on whom we can rely for support, host a message board forum so that families can organize ourselves network and rely on our worldwide counterparts for support, directly fund cure-based and treatment-focused research, and compile summaries of laboratory and clinical research in layman's terms for the families.

FSMA is the very definition of "a good cause" and if you have a few bucks to throw to it, I'll take them. If you do or don't, the fact that you're just aware of the disease that defines us now is a win, as far as I'm concerned. Thanks for all your support over the last two years--I feel like a broken record saying that all the time, but it's true. Managing this stressful life in a vacuum, with nobody to listen to me or hug me or bring me bottles of wine, would blow chunks.

Not a Pity Party. But Ugh.

2010-11-02T15:41:00.003-07:00

Me: Is there anything you can't reach anymore? You're tall enough for all the faucets and shelves now--we should get rid of this step stool.

Jenna: But in case someone cures SMA soon then Kyle and Lauren can use it when they can walk. We should keep it a little longer.

Sometimes--sometimes it hits me right. here.

Two Years.

2010-10-26T05:38:00.000-07:00

Two years ago today was when the twins were diagnosed with Spinal Muscular Atrophy. Two years since we stared in disbelief at our happy one year olds while we listened to the neurologist deliver anyone's worst nightmare to us over the phone. It was entirely life changing.

SMA is a type of muscular dystrophy which affects voluntary muscles. SMA patients are weak, because they're missing a specific muscle protein. They are highly intelligent but are frequently described as "floppy" because their limbs have so little muscle tone that they flop around unless we're very careful in handling them. They cannot sit, roll, crawl, or walk. Their respiratory health is of utmost concern because they cannot produce an effective cough. Think about it--a good cough requires the cooperation of your diaphragm and other abdominal muscles. SMA patients can't cough like you or I can--in fact, many SMA babies can't swallow, or even breathe on their own. The severity of muscle weakness is broad, but the thing that all SMA patients have in common is the deletion of that SMN protein--so regardless of how severely one is affected, the same cure will cure them all.

Despite the dozens (hundreds) of families that I've come to meet and chat with who are affected by SMA, the disease is still considered rare. Because of this there are limited research dollars available to hunt down a cure or treatment. There are some extremely intriguing advancements in the fields of gene therapy and stem cell treatment, and I am on the edge of my seat every morning when I turn my computer on in hopes that a breakthrough for treating SMA will pop up on my RSS feed. So far, no luck. SMA is terminal. There is no treatment. 50% of SMA patients pass away before they turn two years old. My twins have so far beaten the odds, and I am very much aware of this every single day.

Families of SMA is our central resource for support when it comes to handling daily life with this diagnosis. FSMA not only keeps the families all networked together and provide moral support, but they fund critical research to find a cure or treatment for SMA. This year, on November 21st, the Arizona chapter of Families of SMA will host a Walk 'N Roll to Cure SMA in Scottsdale. It would mean so much to us if you could be there. We should have our wheelchair van by then, so both kiddos can show off their pink and blue wheelchairs, respectively.

If you can't attend our Walk N Roll, then consider throwing a few bucks our way via this link. If you represent a business, consider donating your product or a gift certificate for our raffle that day. Register to walk with Team Double Trouble--or submit your donation--by clicking here.

I am confident that a cure (or very effective treatment) for SMA will be discovered in my lifetime. I wake up everyday hoping that a cure for SMA will be discovered in my children's lifetimes. And the best part is that researchers think that a cure for SMA could unlock treatments or cures for other diseases, too--ALS, Duchenne's Muscular Dystrophy, and Parkinson's, specifically. The possibilities are exciting, but we need money. If you can donate money, I will take it. If you have some spare prayers, I will take those, too. Your moral support over the last two years has been critical to my sanity, and I thank you for it very much. As I continue fumbling my way through motherhood--and parenting twin toddlers with a physical disability--your continued support and shoulders to cry on and acting as sounding boards deserve their own awards.

There was a time when I cried over this every day. I don't hardly cry about it anymore--at least, not on a daily basis. Grief is exhausting, especially when my gorgeous children are still alive and happy and bring such joy to my life. I'll save the tears for later when I really need them. For now, though, life is good.

Much has changed in two years.

Wheelchair Accident #2

2010-10-25T08:38:00.005-07:00

A couple months ago, Lauren rear ended Kyle while they were racing around the house and smashed her foot, which was unprotected and hanging off her foot plate. She was bruised, but not broken.

Then, a few weeks ago Kyle was the subject of the wheelchair hazards. The accident involved him being loaded onto the school bus. It was nobody’s fault--a complete accident—but it resulted in three broken Kyle toes. He’s mostly healed now and has been such a trooper, but he seems very averse to getting back into his chair.

Keep in mind, he’s only three. He’s not a proficient driver on a good day anyway. But since his accident I just cannot convince him to get back into his chair. When he goes to school, he has no choice—he’s in his wheelchair. But at home all he wants is to sit in his high chair and not be moved. I literally have to push his high chair from the kitchen to the play room or wherever he wishes to go. I know at this point that he’s not in pain, so I suspect he’s just afraid of his wheelchair.

How to get him over his fear and back in the saddle? Or the chest harness, as it were? Anyone been there done that?

The whole thing pretty much blows chunks.

An Empty Tummy is an Empty Mind

2010-10-06T12:19:00.005-07:00

My friend Cameron over at Peas & Bananas is running an awesome program this month to benefit a Valley food bank. For every Outside with Lil Boo book sold in the month of October, the author will donate four cans of food to St. Mary's Food Bank.

I've reviewed his book already if you recall, and my kids love it. If you haven't already bought a copy for your kids, consider doing that now and help out St. Mary's. It makes a great gift, too. :)

For your purchase to count towards this food drive, click and buy here. Spread the word!

The twins go gaga for Lady Gaga or something less lame sounding.

2010-10-04T06:13:00.000-07:00

The twins' favorite songs these days include anything from Lady Gaga. They show a preference for Bad Romance, and I've been trying for weeks to get footage of them singing it. Lady Gaga, you just let me know when you want them to join you on your world tour.

(if you can't see the video above, it's because you're reading this on Facebook. Click "View Original Post" to see the original blog posting with the video.)

Overheard

2010-10-02T21:37:00.003-07:00

Last week, Jenna (my 1^st grader) and I had the following conversation:

J: What does that ribbon on our van say?

Me: “Cure SMA”

J: I changed my mind.

Me: What does that mean?

J: I don’t want to cure SMA.

Me: [involuntary gasp] Why?

J: I like hitching rides on the back of their wheelchairs. I don’t want them to ever walk. I want them to stay in wheelchairs.

Not sure why I’m sharing this. Even if a cure came tomorrow I don’t think that it would be enough to make them ever walk--They’ll be in chairs for the rest of their lives. But that she identifies their chairs as a part of them and sees them as pluses instead of minuses? Priceless.

So then in the mailbox I found...

2010-09-27T18:06:00.000-07:00

Would you just look at that handsome family there at the bottom. Whoever on earth could that be? Read the Consumer Reports guide to health care reform here.

Want another take on this year's health care reform bill? My pals Bill and Victoria--parents of sweet Gwendolyn and founders of the Gwendolyn Strong Foundation--interviewed with the New York Times last week.

Halloween Costume Brainstorming

2010-09-20T07:02:00.001-07:00

For Halloween this year, the six year old wants to be a vampiress.

Three year old girl wants to be Snow White. Three year old boy claims he wants to be a pig (?).

My challenge to you, blogosphere, is to help me come up with ways to incorporate the three year olds' wheelchairs into their costumes. I'm not sure what we can do with them for Snow White and a pig, so throw out for our consideration even better original costume ideas which can incorporate their chairs.

My pal Lorraine set the bar high last year with this masterpiece for her daughter, Zoe. See what I mean?

The gauntlet's been thrown! Brainstorm away!

HOWL!

2010-09-19T23:21:00.007-07:00

I know that most of you don't follow me for hockey stuff, and I get that. But this weekend was the beginning of camp for the Phoenix Coyotes (season starts in about 3 weeks) and I was beyond thrilled just knowing that they were back in town and lacing up their skates here. And then I heard that all their practices are open to the public. I figured the kids might really get a kick out of going to see hockey for the first time, and the event is free so even better, right?

I knew I wanted the twins to be at the arena in their wheelchairs--and I'm sorry, I know this probably gets old to you guys, but we're still getting used to them being self-mobile in their chairs all the time. What's funny is when I take them somewhere in the old fashioned baby stroller, they HATE it. They're stuck going where I push them and they can't go here and there and to and fro and they miss their independence. And I love that they miss that. It took me 13 months and seven insurance denials to get them to this point, so they damned well better prefer their own wheels to my stroller.

Anyway, since I've not been to Jobing.com Arena for a long time and didn't know how wheelchair friendly it was, I decided to give them a call to get a feel for what we were in store for. I contacted Director Paul Serbic at Jobing and he promised me he'd hook us up. He gave me his personal cell phone number, met us at the gate, took us down an elevator to the glass and let us stay there for hours while we watched the Coyotes skate. It was so awesome. The crowds were light, but all the big name players were present: Doan, Hanzal, Morris, Prucha, Pyatt, Jovanovski, Bissonnette, etc. I can't guarantee that my babies will ever see a real live NHL game in person, but good golly I let them touch the cold glass, admire the ice, and watch the boys skate.

Lauren was quite concerned that "the boys are playing too rough", and then someone got checked right into the glass in front of her and she about lost it. Kyle only cared about the pucks, which worked in his favor because between the refs and the coaches he got three pucks (with ice still on them as souvenirs). Jenna only cared about howling (it's a thing at Jobing) and hot dogs (that's a thing with six year olds).

We met Jim Brewer, VP of Coyotes Marketing and Communications, and he gave the kids a tour of the down-beneath so that they could see the Zambonis. We met the head of security, who is a fine, patient, capable gentleman. We met Howler, the Coyotes mascot. And Paul gave each of the kids a Coyotes teddy bear.

I walked on air all day. A sport I love, a team I adore, staff who bent over backwards to show my kids a good time--this is why I love my city. If I'd had a second to breathe and reflect that day then I would have gotten all teary-eyed then like I am now. It's just that we can't bring the kids in their wheelchairs everywhere--but this is the place where we can. In the U.S., almost every place by law has to be wheelchair accessible, but there are degrees of wheelchair friendliness. I just am so happy that the Phoenix Coyotes can accommodate my family and I can. not. wait. for the season to start.

Except for the whole "I'm afraid of heights and sitting in the upper bowl completely freaks me out but I can't afford five tickets in the lower bowl so I guess upper bowl it is but I'm going to need a drink" part.

Without further ado:

Also: I am new to hockey. I have never EVER hidden this fact. I don't know icing from a regular pass. I enlist Twitter friends to whisper things to me so that I understand the ABC's and 123's of hockey--Seriously. But if anyone needs a new fan, it's the Phoenix Coyotes, and if the world won't suck it up and accept me as a new fan then I don't know what else to do. I don't know the sport and I've never played it--I'm a Suzuki trained violinist for crying out loud. I bring nothing but enthusiasm for the sport and money for my game tickets. If you don't like me or don't care for my stupid rookie questions then f-u-c-k y-o-u. I'll be in section 118 and you can buy me an $8 beer when you get over yourself.

This is SMA

2010-09-16T00:24:00.003-07:00

Today some of my favorite people are blogging together, simultaneously--it's an "S MA Blog Party". Of course, there isn't much to celebrate. Severe physical disability isn't the stuff that balloons and clowns and ponies can fix (or is it? hmm). I wish I didn't have a reason to know these people, though. I mean, they are perfectly fine individuals--awesome people that I'd be lucky to be friends with under traditional circumstances--but I only know them because our kids suffer from the same terminal illness.

That figures, huh? "Great to meet you, but I'm sorry I have a reason to meet you at all." That's what I tell other parents of kids with Spinal Muscular Atrophy. I admit, that sounds pretty shitty of me to say, but they always understand. They understand because their other, pre-SMA friends don't. And they don't want to know me anymore than I want to know them. I don't want my kids to suffer a debilitating and ultimately terminal disease anymore than they do. But you know, if wasn't our kids then it would be someone else's kids. So I set aside my typical "woe is me" point of view for today.

You want compelling? Read about Andy here.

If you want to learn more about SMA, certainly visit ByrdsForaCure.org. Look for the new video I posted from our recent MDA telethon segment.

If you want a tiny slice of life with kids in wheelchairs, visit this gem of an article.

I was granted the opportunity to guest post on my friend Debi's blog, in honor of today's SMA Blog Party. Check it out.

What I'd really love your support in is regarding the Jimmy Johnson Helmet of Hope contest. You don't have to create a profile or log into anything. Just click here, scroll down to select the Gwendolyn Strong Foundation, enter the security phrases, and hit enter. Piece of cake. You can do this daily until the end of September.

Gwendolyn is the same age as my twins, but she has a more severe form of SMA. The amazing thing is that the same cure will help all of them, and a cure for SMA may unlock cures or treatments for other diseases, too. So do me a solid and vote to give the Gwendolyn Strong Foundation $20,000. All the money goes towards funding cure-focused research. The research community agrees that we're on-the-edge-of-our-seats close to a cure for SMA. Let's make it happen, my friends. Click, vote, and let me know that I can add you to my long list of people who support the Byrdlets and our other SMA friends.

Buying in Bulk From Apple?

2010-09-03T11:00:00.001-07:00

The twins have limited fine motor skills, so when it comes to holding a pencil or pressing buttons they tend to struggle a little. They have played with the iPhone a little--we don't have iPhones, but we know people who do. Some very patient people who allow clumsy three-year-olds to play with their very expensive electronic gadgets.

I am sold on the iPod touch. I want both twins to have them. And of course Big Sister would need one of her own, too, because heaven forbid my children have to share anything. Plus, this week I also got to play with an iPad, and in an ideal world all my kids would have one.

This technology... just, wow. Does Apple even realize the world they have opened up for people with disabilities? There is no chance that the twins could manage a regular keyboard and computer, so the iPad just, well, it blows my mind. It's incredibly cool--and fragile. Hello, Apple? You listening? Could you make a kid-proof iPad that can be repeatedly dropped without breaking? Thanks.

I want them to have cool "toys". I want to stimulate their minds. I want them to learn stuff. I want them to be comfortable with computers. I cannot even begin to put a price on the value of these Apple products. But Apple sure did, eh? Can you imagine the cost of three iPod touches and three iPads (to help you imagine, I calculated--$2,184. Plus tax.)? I don't blame them for their price points, but I'm feeling a little overwhelmed at the expense. Other kids spend their time walking and running and getting into everything and satisfying their curiosities every minute by exploring the world around them--my kids are stuck in their chairs and can only play with lightweight toys with simple/easy buttons. Plus, their big wheelchairs combined with their short arms means that they can't reach out to grab things very well. Anyway, all I'm saying is that Apple's technology is incredibly innovative and so useful to people in the disabled community and I can't wait for my kids to benefit from it. And if I buy all this stuff at once, any chance that I could get a discount?

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On a side note, as I drafted this blog I was unsure how to pluralize "iTouch" and so I asked Twitter. The Twitter community came through for me and made me laugh so hard that I'm still crying a little. It turns out that what I mistakenly thought was an iTouch is actually an "iPod touch® mobile digital device(s)". And now you know, too.

School Bus Days

2010-08-19T19:16:00.000-07:00

The twins had the privelage of bus service for the first time yesterday. This is significant, because it means they can finally take their wheelchairs to preschool instead of a stroller. I'll let the photos speak for themselves.

Being self-mobile at school was a little overwhelming. There were some tears. Their teachers and classmates are getting accustomed to life with wheels in the classroom. Overall, we are pleased to see another milestone reached.

After school as the sun began to set, some neighbors came out to play--and here we demonstrate one reason why these high-tech wheelchairs are so great:

First Day of School 2010

2010-08-17T08:56:00.000-07:00

Yesterday was pretty exciting--Jenna started the first grade and the twins started preschool.

Here's Jenna. She claimed it was too bright outside to open her eyes. I took 8 photos and this was the best one. She does this to me every year. Hm, perhaps I need to take the hint and snap her pic while she is in her classroom rather than outside? Brilliant!

The twins also started school. Now that they're three years old, the school district is required to offer them preschool services for free, based on their developmental delays. The preschool located at Jenna's school was full, so they are enrolled at the next school over. We haven't had time to arrange bus service, and since we don't have an accessible van yet I have to transport them in their car seats and the school has regular umbrella strollers to manage them for now. So, in the mornings they'll play, have circle time, sing songs, and get physical and occupational therapy at school, and then I pick them up at lunch time. Here is the big boy and big girl on their first day of school--again, hard to get decent photos of smiling children when it's so hot and humid and bright outside!

It was an exhausting day. We're still moving out of the old house. Our new house is filled with boxes. We hope to have the old house up for rent before the end of August--wish us luck!

What I Wish I Wouldn't Have Said.

2010-08-09T21:49:00.001-07:00

I was at Walmart the other day, and I had the twins in their usual spots in the shopping cart--Lauren up front/top, and Kyle in the lower big basket area sitting in his Bumbo.
A SUPER sweet lady with three of her own kids in tow stopped to ogle the twins, share her own story of her twins, and then comment on how good my twins were in the shopping cart. And then she kept on. She asked how old they were, how she couldn't believe how lucky I was to have three year olds who aren't running amok, how well-behaved they were in the shopping cart, etc. I didn't know whether to tell her or not. And so I did.

As it turns out, there's not much shittier than telling a totally well-intentioned fellow mother that the kids she thinks are so well-behaved are only sitting still because their bodies don't allow them to do otherwise. It blows chunks, even. She back pedaled and apologized and she felt so bad, and I tried to tell her it was okay, I understood and I don't feel bad and neither should she, but she had to go because her kids were dragging her and my cashier was ready for me but all I wanted to do was grab a coffee with her to swap fun twin-mom stories and make sure she knew that she didn't offend me.

So if she's reading this: you didn't offend me, my friend. I like it when adults talk to me. And I am always happy to talk about SMA and my twins, and my oldest is who is a model helper and will make an excellent babysitter one day. I never intended for you to feel bad at all, and I am always happy to hear of the fun stories and achievements of others' children. It makes me sadder to think that you felt sorry for choosing to talk to me. Please talk to me again, if you see me. You can't miss me--I travel with a talking circus (the children). I hope I see you again.

Peas and Bananas!

2010-08-04T09:40:00.003-07:00

I happened upon an adorable children's book called Peas and Bananas: Outside with Lil Boo and I have to share it with you.

Lil Boo is a little boy whose outdoor adventure is illustrated so beautifully in this book. It's fun to read to the kids, with the rhyme and cadence that makes a children's book so appealing to little ones. As I read it to the twins last night, I couldn't help but think what a perfect, unique gift it would make for a baby shower or for a 1st or 2nd birthday--so if you invite me to an event like these, you can guess what gift I'm bringing with me. Really, I love coming up with off-the-beaten-path gift ideas that nobody else has seen, so that's why I'm so pleased with this one.

Even better the author, Cam, is local to Phoenix and he's a friend of mine. He really says, "Peas out!" in real life when he leaves, and he wears yellow and green shoes. Check out his book. You can buy it from Amazon, or directly from the publisher for the same price.

Don't bother reading this unless you're my sister.

2010-07-28T20:35:00.000-07:00

Dear Sis, you have been complaining that I don't post pics of our new house. I'd like to remind you that Tucson is only a 2 hour drive from Phoenix and you own a vehicle. If you need gas money, go ask Dad.

Without further ado:

Our billiards room. It's missing a candlestick, but if you look closely you're sure to find Colonel Mustard there somewhere. It's like a 'Where's Waldo' challenge--find him!

The main living area. Pool table room to the left, hallway to kids' bedrooms to the right. Kitchen table--when delivered--will also be off to the right.

J's new room. Purple, pink--you'd never know she's a girl, would you?

K's room--you'd never know he's a boy, would you?

Kids' bathroom. I don't know why I'm sharing this. I guess because it's one of the few completed rooms in the house. Enjoy.

Official move in time is this weekend. Please remind me why I perpetually choose to move in the freaking hottest, muggiest time of year?

Hope to see you soon, sis.

Sincerely, me.
xoxo

Billiards Table + OT = Fun For All!

2010-07-20T17:12:00.004-07:00

Our new house is full of workers still, but we spent some time there today with the twins in their powerchairs. Grandpa's pool table was relocated to the new house over the weekend (thanks to the muscles of a whole crew of strapping young men) and now we have a whole slew of new opportunities for fun and games and occupational therapy!

(if you're reading this on Facebook, you'll need to click "View Original Post" to see the video.)

Boy Meets Chair

2010-07-11T19:46:00.006-07:00

It's been 13 months, 5 insurance denials (at least), and three phone calls with the governor's office (!), but finally, the boy got his wheels. There are still some tweaks to be made in terms of his seating and joystick placement, but behold the beauty of coordinating boy/girl power wheelchairs:

And note that even photographing them from the back, Kyle is still on the left. Have you noticed that? I almost always put him on the left. I don't think I'm OCD or anything, but the boy being on the left is certainly a recurring theme with me. Also, I am left-handed. Also, the girl is left-handed. The boy is a rightie. I don't know what all this means--you pick it apart for me because I'm already confused after just writing this paragraph.

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So, in case you're joining us for the first time, my twins just turned 3 years old and have a neuromuscular disease called Spinal Muscular Atrophy. They didn't show any symptoms until about 9 months of age, and it took 6 more months to get a diagnosis. SMA kiddos are super smart and social, but their bodies are weak. This is a degenerative disease. It is terminal. There is no cure. That bears repeating: My twins have a terminal disease, and there is no cure. But there are some nifty ways to make life more normal for them, and $65,000 power wheelchairs are one of those ways.

We also have a daughter about to start the first grade, and she does not have SMA--however, she does have what I like to call 'bout-to-be-terminal-sassyness. But my middle name is patience, so 'we shall overcome'. No worries.

Lauren got her chair in January, but Kyle's chair inexplicably got delayed 6 more months. The powerchairs are the reason why we're moving to a different house. We closed on the new house last week and hope to be moved in by the time school starts next month. We're also shopping for a wheelchair accessible van so that we can, you know, actually go places with their chairs. We're looking at shelling out well over $50k for such a thing, which completely blows, quite frankly. If I spend $50k on anything, it better include some sort of kick-ass tummy tuck for Mom, amiright?

So to those who stuck with me during this year-long ordeal, thank you. I know that complaints are not very interesting to read, but you hung in there and I high-five you for that. And my blogging frequency may be affected with the big move we're about to embark upon, but I hope to get back to the regular funny shortly after that. xo

p.s. the Jerry Lewis MDA telethon will occur Labor Day weekend, somewheres around September 5th, 2010. Watch the blog for some potentially interesting updates on this. Nothing is finalized yet, but let's say that the twins and TV cameras could be involved. Shhh, you didn't hear it from me.

Wheelchairs and Flooring and Sex.

2010-07-03T22:01:00.000-07:00

Just kidding. There's no sex in this post. But who would click on this to read about wheelchairs and flooring at 10pm on a Saturday night? I thought so.

Today, a lovely man from an upstanding flooring company quoted us $17,000 to tile our new house.

Give me a second to process that figure. See "Money Pit" reference in previous post.

Okay, so this estimate is based on 20" porcelain tile for 2200 square feet of empty house. He claims that the porcelain tile is stronger than ceramic, and since our floors will have so much powerchair traffic, this is what we need. The chairs weigh 311 pounds, plus the weight of the children, so he does have a point about considering the most durable floor option.

My question to you, interwebz: is he right? You folks who deal with power wheelchairs in your own homes, what tips can you provide me in terms of durability? I'd love to do wood floors, but I can't see the wood holding up under all that use as well as tile. Are there other (cheaper) options about which I need to know?

Finally caught Kyle looking very Roberto Luongo-ish in his Dynasplints. He doesn't even call them splints or braces anymore--they are is "hockey pads", and he is very proud of them! (I know you've seen these from an earlier post, but now that he has his Canucks shirt on I had to share.)

House, yadda yadda and some more yadda

2010-07-03T00:05:00.003-07:00

We indeed closed on the new house. This is full of The Awesome, because this means that the 2/3 of my children who can't walk can now be self-mobile (once we move in). See also: wheelchair accessibility.

Today was full of spraying the hell out of some bugs, rekeying the locks, consulting on paint colors, measuring to ensure there is room for Grandpa's billiards table--YES! WE CAN KEEP THE POOL TABLE!--and counting the missing ceiling fans (10 of them).

Tomorrow will be full of the hey let's spend two grand or more on household appliances plus enough Valspar paint to cover 3,000 square feet of awesomeness. Plus the 10 ceiling fans. Plus the 14 windows that need covering. Plus new flooring. Plus Plus Plus does it even matter because I pretty much feel like Shelley Long in the Money Pit. Minus the whole Tom Hanks falling into a hole through the floor/carpet. Because OMFG that is the BEST part of that movie BAR NONE. Kim--Am I right?

Pics to come. Do you hear me, sister? Pics TO COME. Quit pressuring me. I have 5 people and 3,000 square feet of life to move, and all in an orchestrated fashion by which only MS Project could be impressed.

You think I'm kidding. I am so utlizing MS Project for this endeavor and they're not even paying me to admit that. Related: Why the hell not? Carry on. Or not. Whatever.

Dynasplints Day

2010-06-29T19:04:00.003-07:00

Kyle has pretty severe knee contractures which can be corrected over a period of a few months with splinting. Lauren does not have knee contractures, so she is spared this discomfort. We've been waiting for eons for our state to approve his knee splints. Somehow they were finally approved, and here they are. They're made by Dynasplint.

As it turns out, one of our local Dynasplint fellows lives a stone's throw from where (hopefully) our new house will be located. We were scheduled to close today and (shock of shocks!) it's been delayed until tomorrow. Let's just say I'm still not holding my breath.

I know I've been derelict in my blogging duties. We've got lots of stuff coming up that I can blog about as we meander through the blazing heat of July, though, so stay tuned!

Singing

2010-06-21T20:19:00.002-07:00

Oh ho ho! It's been WAY too long since I've posted some quality video of a Byrd twins' voice recital. Without further ado:

Kids Say The Darndest Things

2010-06-11T21:25:00.003-07:00

the 6 year old: "Mom, did you know that boys go to college to get more knowledge, but girls go to Jupiter to get more stupider?"

me: "Where'd you hear that?"

the 6 year old: "VBS."

me: "That's great. Say, would you like to know how the real world works?"

the 6 year old: "No."

me: "That's okay, I'll tell you anyway. It's 'Girls go to college to get more knowledge. Boys go to college to join a fraternity and get drunk and stupid.' "

And that, my friends, is what she sing-songed the rest of the night while she skipped around. No no, I've patted myself on my own back, you don't need to do it again for me. ;)

Vancouver Vacation Recap

2010-06-07T22:40:00.001-07:00

If I told you how awesome my Vancouver vacay was, you would all rush to visit there and crud up the sites, and I won't allow that. So hey, Vancouver sure did suck...

Nah, it pretty much didn't suck. It pretty much knocked my socks off, actually. Friday was a little drizzly, so we spent our time indoors at Granville Island and that's where I spent most of my money. Oof. Mastercard even called my house afterward to make sure I was safely in possession of my credit card. (You think I'm joking? I couldn't be more serious.) And pedestrians in Vancouver are just adorable! They step off the sidewalk at any old spot and just walk across the street without looking. And Vancouver drivers love this! It's like they all agree to take care of each other and love each other like they're their own children.

Bizarre broom shop at Granville. All they sell are brooms. Apparently they sell enough brooms to pay the rent (?). Some broomsticks are hand-selected from from Manzanita county, which is in my neck of the woods (relatively speaking).

Totem Pole carving. No, totem poles are not made in some factory. They're hand carved, here:

The Granville Island market. Loved it. Could have spent LOTS more money here, but instead we bought a handful of morels and took them back to Jenn's and sauteed them and ate them up.

This pic was taken from the doorway of a racy shop at Granville Island. They sold all kinds of unmentionables, and they were hidden beyond what you can see here in this pic. If you love burgundy velvet decor and bustiers, this is your store:

I spent Friday night meeting up with new friends (thanks to Twitter for introducing me to Alix and Jason and Chris) at the Black Frog and later on at the Pourhouse. That's where Jenn and Walter joined us and we took this photo:

My new favourite beer, Red Racer. I loved the can:

Saturday was an awesome day. I had breakfast with friends in Yaletown, and then I met up with Jenn and her kiddos and two other SMA families at the aquarium in Stanley Park. It was a great time, and while I loved being around other people's kids what I mostly liked was that I was not in charge of them. It was like I was the fun auntie.

After the aquarium, we visited the petting zoo there in Stanley Park, and took a ride on the train. Full of awesome sauce.

Later that day, we grilled out at Jenn's place (Walter gets my mad props for his grilling skillz):

Afterward, the ladies visited a tavern which allowed us to pay for our first round or two, but then kept passing us free booze. I don't want to tell you where this place was (I'm loathe to get them into trouble, what with all unpaid for alcohol we consumed), but here was the board we saw upon walking in:

My trip was fantastic. It was a great choice of destinations for a change of scenery for me. My husband kept the children alive and happy. And Canada seems no worse for the wear. I can't wait to go back to Vancouver--perhaps during hockey season, eh? Thanks to my hosts and friends there for showing me such a great time!

Bienvenue a Canada

2010-06-04T01:33:00.006-07:00

[Truthfully, I don't know if French requires the use of the personal "a", but that's what I wrote because it sounded right.]

My flight was mostly on time. Flight was uneventful--but only because I was as far away from a window as I could possibly be (see: agoraphobia). I introduced my seatmate to the magic that is mental_floss magazine. And I think I even dozed off--sweet.

And then I landed and the Canadians are adorable. They are so friendly and bubbly and helpful and they put up with me wanting my photo taken at "The Oval" at midnight and they use this adorable, colorful pretend money and I don't even know what it really means.

My BFF Jenn. aka Vancouver's biggest fan and office of tourism unofficial spokeswoman.

Me! Shivering outside of The Oval! Just kidding, it was around 55*F.

And yes, I could throw a rock and hit BC Place. Hm, well maybe not a rock. Okay, I could hit a golf ball with my 4 iron and hit BC place--it's so close!

More to come! Maybe. Just kidding, totally more to come. Perhaps.

What a meanie!

2010-05-31T22:40:00.003-07:00

We went to the mall today--as all good Americans do on patriotic holidays. I spied a woman in a powerchair and quietly pointed her out to the twins.

Kyle: "It's a power chair!"

Lauren: "It's a red power chair!"

Their voices aren't very loud. They do point, but with weak arms. But this woman was near enough to us that she heard them. And she read them the riot act. "You kids. This chair is like my car, it's how I get around. And I push this button here to get away from people like you."

I have never. been. so. speechless. I point out this role model in her power chair roaming through a public place because I want the twins to see that they won't be the only ones. And she looks down her nose at my babies, assuming these cherubic two year olds are being disrespectful? Well guess what bitch? You're the one who is stuck with a piece of shit Invacare chair while my kids' chairs are individually probably worth more than your house.

She didn't give me a chance to interject before she powered herself away. What can I say? I had three kids who were watching me for cues and me dropping an f-bomb was not an option. My eyes were glazed over and the smile was glued to my face. And then I remembered we had cookies from Paradise Bakery which are WAY better than any meaningless approval from some disabled stranger.

So now that I've settled down (can't you tell that I've settled down?), I'd like to remind everyone about karma. And assumptions. Just because my kids are gorgeous doesn't mean that they aren't severely disabled (how can you not notice this?). Also? Their chairs weigh 300+ lbs and they will run over your foot if I give them the code word. (I'm just kidding. We're not so smooth a machine yet. If they run you over, it's by accident. Unless you're a British Petroleum executive and then it's totally on purpose--after all, I raise my children to be responsible citizens.) But really, all the rest of yous--I get that many people are saddled with crappy situations and we're all fighting a battle of some sort. But there's a special place for those of you who talk down to kids and don't even let them engage you enough for you to realize that they're worth listening to.

Also, this isn't the first time this has happened. It's just the first time I've told you about it. This is at least the second time. Our elders sure can behave like ass-hats.

Interested in plugging your business?

2010-05-20T09:02:00.005-07:00

At the 2010 annual Families of SMA conference there will be an auction. All the families attending the conference are tasked with bringing something to donate to the auction. I'm having a hard time coming up with something suitable to contribute to the auction, so I thought I would throw this out to the blogosphere:

If you own your own business, or if you sell handmade items of value, consider donating to the FSMA auction, or offer me a discount to buy it so that I may donate it. Many of the attendees are not typical families with young children--their children may be on critical life-saving machines all day, be fed through tubes, be on ventilators. The tragedy of SMA is what brings us together at this conference, and so our hearts can sometimes get heavy. Themed gift baskets, books, jewelry or other gift items might all be appropriate for this auction.

Proceeds from the auction benefit Families of Spinal Muscular Atrophy--a great cause. I'd love to support any mommy entrepreneur by bringing your creations with me to this auction. There is no set dollar amount, but I'd like any item I bring to have a little "oomph". Pass the word, and please get in touch with me by mid-June if you're interested.

Update 9 June: I've had a great response from the SMA community! I have a few great items to bring along to contribute to the auction, but would love more. Gift certificates, handmade items, local services, movie tickets, music or anything else that a family/couple might enjoy would be welcomed contributions to this auction. FSMA is a charitable, tax-exempt organization, and I can provide you with their tax ID number that helps anyone.

My First Guest Blog

2010-05-18T17:45:00.000-07:00

I "met" my friend Debi years ago when I was pregnant with the twins. We were pregnant with our twins at about the same time, and we've been Facebook friends and Twitter buddies since day 1. I haven't actually met Debi face-to-face, but we're great virtual friends!

Debi writes a popular mommy blog, and when she planned a long roadtrip with her family this month she approached a few of us to guest blog for her while she was gone. I happily agreed, and wanted to share! My post is a light hearted look back at my pregnancy with the twins. Enjoy!

Bouffard 11: Who Says 8 Is Enough?

My Million Dollar Idea! Golfers, Keep Reading.

2010-05-17T18:51:00.000-07:00

Summer golf league is off and running, and Jenna wants to golf with me sometimes. That's understandable. It makes me sad, though, that golf can't be a family activity for us because of the twins' disability. Chris golfs (he's better than me) (which actually isn't saying much), Jenna could golf with us, but the twins don't have the arm strength or hand dexterity to swing a club.

A-ha! I have an idea--mark the calendar.

What if there could be a way to mount our golf bags on the twins' powerchairs? Can you imagine! The twins could be the only three year olds in the world who understand "the 90 degree rule". They could get so good at observing my game that they suggest which club to use at that tricky spot when I'm 120 yards from the green (they'll know the distance based on the golf Garmin that I shall mount to the arms of their joysticks) and on a bad lie--4? 5? 6 iron? It's a crapshoot with me at that distance and a cruddy lie, really.

There must be a way for this to happen. On the Permobil C300, it's easy--just insert the clubs on the platform behind the seat (or rather, prop them up out of the top of the opening if necessary), and secure them with some sort of hefty belt. But the K450 presents a dilemma. There is no real platform behind the seat of the K450, so that only leaves the sides. And there's no legitimate platform on either side on which a bag can rest. This might require a DIY add-a-platform-to-wherever-it-will-fit project. And the bad news is that I did not take shop class in school--I was a violinist, so I gave up a class on practical, real life experience in order to goof around in the band room. I might need some help.

I emailed Josh the wheelchair guy tonight, and he promised he can find a way to custom-mount my bag on that K450--sweet! But I'm not sure I believe him...

But hey! I'm a mom! And a mom of twins! Is there anything we can't do? Any problem I can't solve? I think not. So, I give you this:

C300

K450

Done and DONE!

Sometimes I'm just so awesome that I amaze even myself. You'd think I'd be used to so much Awesome by now.

Friday Kitchen Sink

2010-05-14T21:47:00.004-07:00

1. I am almost completely healed from all my various itis'es and sprains and strains. I'm back golfing, and am slowly getting back to running (after a 3 week hiatus).

2. Chris has booked his trip back to MS for his 20 year high school reunion. In Mississippi. In July. What a masochist.

3. Jenna only has two weeks of school left. What the.... ?

4. Lauren is doing great. Tonight, she only called me Captain Feathersword, and only answered to "Murray Wiggle". Jenna was "Jenna Wiggle" and Kyle was "Max Wiggle". Not sure what that was about, because there is no such thing as Max Wiggle.

5. Kyle still does not have his wheelchair. Not even close. In fact, he might be further away now than he's been this whole entire process--it's been one year since we began this journey. He also has significant knee contractures. And he's so low on the growth chart (does anyone have a link to that "special needs children growth chart" from the NIH?) that the neurologist is writing a letter to our GI doc to recommend a feeding tube. Kyle (and Lauren, too) cemented that argument by choking on their juice boxes. The neuro is contacting our GI doctor to recommend feeding tubes before next fall.

So, I'm not opposed to getting my kids what they need, but I hate that they seem to be getting stronger in so many ways, yet continue to choke and potentially aspirate liquids. This is it, kids. If we make the decision to install that feeding tube (mickey button), it's in there forever. Is it the right choice? Is there hope for a sudden leap in swallowing strength in the near future? Or do I give up and go with the option that painlessly adds nutrition and calories and bulks him (them?) up a bit before next flu season? And that option, ugh, it means adding an externally visible sign that says "I'm not normal" and also reminds me of that fact every day? I do a decent job pretending that there's nothing wrong with the twins, most of the time. Dealing with a g-tube and boluses and whatever else...well, to be honest? I thought we would have cured SMA before I had to make these decisions. They'll turn 3 next month. They've beaten the odds. But I do want them to be in the best possible shape to survive all their future flu seasons. Proper nutrition is key. I get that.

I'm going to get pity-partyish if I don't stop now. It's just that I don't want to tube feed my babies. I want them to eat what every other two year old eats--hot dogs and goldfish and juiceboxes. And I don't want them to aspirate while they do it.

We've resumed our house hunt. Our "perfect wheelchair accessible house" that we've had a contract on since last October finally got foreclosed on and the bank sold it to another buyer this week. Chris and I are wondering if we shouldn't increase our price range and just buy a home on a golf course. It'd decrease the mileage on my vehicle (and increase our popularity among friends) significantly.

Happy Weekend. Peace.

An Open Letter to Children's Rehab Services and Arizona Physicians IPA:

2010-05-06T22:41:00.001-07:00

Dear CRS and APIPA:

I am the frustrated mother of three children--they're all fabulously gorgeous and clever, but two of my three have a form of muscular dystrophy called Spinal Muscular Atrophy.

My 2-year-old twins have SMA, which means that they can't roll, crawl, or walk. They can sit upright for a short period of time, but a sneeze will knock them right over. Here in Arizona, they qualify for a variety of services based on their diagnosis--including AHCCCS (Medicaid), Arizona Long Term Care (ALTC), the Arizona Department of Developmental Disabilities (DDD), and Children's Rehabilitative Services (CRS).

At this point in his life, Kyle ("the boy twin") should be exhausting me everyday with his energy--running to and fro, being mischievous, and getting dirty. He can't, though, because he is not self-mobile. And at this rate he never will be.

You see, I've been working to get him his own set of wheels since last summer. A kiddo with type 2 Spinal Muscular Atrophy at his age can absolutely operate a powerchair on his own--I know it, because I've seen him do it, and I have home video to prove it. I've provided AHCCCS/APIPA with various published studies, letters of medical necessity, and dozens of pages of other documentation explaining and supporting why this toddler needs and deserves a powerchair of his own.

APIPA is his secondary insurance--we pay a mint for primary insurance through my husband's employer, who covers 80% of the cost of his chair. So far the remaining 20% of the cost of his powerchair is still pending approval from APIPA and CRS. Our primary insurer has already sent approval to cover their 80% of the cost.

The first APIPA denial was because the wrong ICD-9 code was used in paperwork from his doctor. The second denial was because Kyle's claim needed to go through CRS--even though he was denied membership to CRS last year after I applied for him. And then we got a random and confusing letter from CRS suddenly saying he was approved for CRS services. And then his request for a powerchair was finally denied this week for the third time because we didn't go through CRS for our request.

Are you confused? Because I am. Do you think I would waste my time casually asking and appealing and re-appealing for something that he didn't need? Perhaps I have nothing better to do than this? Because I have one child with asthma and two others who require constant attention, not to mention the administration of meds, plus stander time and Cough Assist, and have regular appointments to schedule and keep with neurologists, pulmonologists, pediatricians, orthopedic surgeons and gastro-enterologists, plus physical and occupational therapists, not mention a half dozen meetings with their new special needs preschool. I spend my "down time" researching ways to keep feeding tubes out of them and how to get them to spend more time in their AFO's and standers and hey maybe in my extra time I might fit in some stretches to prevent their knee and ankle contractures. Do you think I have time for your bureaucratic nonsense? As a taxpayer, I resent that you used this many stamps to send me denial letters when you could have just called me to determine what our situation was.

I need a hero there at Arizona Department of Health Services. I need a hero with some common sense and the power to make decisions and make this headache go away. Because what I haven't told you yet is that Kyle's twin sister, Lauren? You've already approved and paid for her powerchair and he has the exact same diagnosis and the exact same insurances. She's been sporting her new wheels since January. So how about we straighten Kyle's chair situation out, or maybe YOU can be the one to explain to my boy why his sister can go off and do whatever she wants to do while he has to ask his mother to pick him and carry him from one activity to another. And then you consider how his mother is going to have the time and money to schedule her own physical therapy sessions (thrice weekly) because of the daily physical strain of caring for twin babies with this debilitating disease.

And when you're done explaining, and paying, and considering, maybe you can help me figure out a way to trade my fancy top of the line minivan for something that can transport two powerchairs.

I know the saying "life isn't fair". But I've given up my entire life for my children (nope, this was not my Master Plan--I did have a lucrative career in IT back in The Day), and their disease is a hundred different levels of overwhelming. I am sick of wasting my time and falling through cracks and making pointless phone calls. What I do not need is one more schmucky, ignorant customer service rep of yours to get fucking condescending with me. I didn't ask to battle anyone, but you make NOTHING easy. What are the chances that one of you will read this and make my year? Probably no chance, I know. But I do feel better having dropped an f-bomb and pretending that you've read it.

Sincerely,
The Obnoxious Mother of the Month

If you happen to be a friend reading this, consider copy/paste Tweeting this message:
Dear @AZDHS, Your bureaucracy is keeping a little boy without the equipment he needs. A little help? http://bit.ly/ba6iTW @GovBrewer

Today, I shook the hand of the next Tiger Woods

2010-05-03T15:08:00.004-07:00

In the golf course pro shop today, the clerk nodded towards the 9th hole and asked, "Have you ever seen that kid before?"

I turned my head to see who he meant--a ragamuffin Latino child, wearing a Teenage Mutant Ninja Turtles t-shirt and basketball shorts, with hair down to his waist flying out of his baseball cap. (He was a sight. I wish I had been in a position to take his photo for you.)

"Nope, I haven't."

The man replied, "That kid doesn't have a bad swing. He's here everyday, practicing putting and chipping. He plays 18 holes once a week here with his dad and uncle."

My knee might be taller than this kid. Seriously.

I watch as the dad and uncle drive away from the 9th cup. Nico, the golfing wunderkind, tears after the cart. He catches it and passes it up, his long hair flying behind him and runs up the stairs to the pro shop.

Says the pro shop clerk, "Nico! My man! What're you shooting today?"

"I got an eagle and two birdies," replies Nico.

Nico's dad tallies up Nico's score for the front nine. The four year old shot a 44. I watch him tee off at the tenth hole, with his wee little driver. The kid shoots from the men's tees. The drive went at least 50 yards, I think.

I need golf lessons from Nico. But for today, he just made me happy.

Weekend Update

2010-04-25T15:20:00.003-07:00

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.

If the Coyotes need some inspiration....

2010-04-19T23:45:00.004-07:00

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!!
;)

SMA: A Mom's Perspective

2010-04-18T20:14:00.014-07:00

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).

Kitchen Sink

2010-04-15T17:01:00.001-07:00

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:

He's a rock star

2010-04-12T22:23:00.007-07:00

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.

Anyway.

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.

Kyle's Boy-Parts Surgery

2010-04-11T07:34:00.000-07:00

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.

Going Bald to Save Babies!

2010-04-10T11:44:00.000-07:00

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.

Powerchairs at the Park

2010-04-02T22:52:00.004-07:00

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.)

Stride N Ride 2010

2010-03-26T03:08:00.000-07:00

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

2010-03-25T17:28:00.000-07:00

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.)