Ho Ho Ho!

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

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!

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

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.

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!

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.

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.

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

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

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.

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

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...

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

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!

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

Today some of my favorite people are blogging together, simultaneously--it's an "SMA 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?

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

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

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.

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!

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.

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!

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

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.

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

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

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

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

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

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!