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

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.

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.

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

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

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

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.

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

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!

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?"

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!

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.

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

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.

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

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.

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.

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.

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

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

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

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

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!

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.

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

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...

...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

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

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

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

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!