Fun With the Ryan House -- and the Coyotes!

We stayed at the Ryan House over the weekend and had a great time, as usual!  Kyle played the Wii most of the time, with a therapy swim and some drum practice in the music room sprinkled in.  Lauren and Jenna spent virtually the entire weekend in the craft room or playing with Snickers the therapy dog. 

We packed so much fun into forty eight hours that I anticipated us skipping school today just to recover, and then I got a neat phone call from the Ryan House.  They extended an invitation for us to practice with Phoenix Coyotes goaltender Jason LaBarbera this morning.  We went and met Jason and his wife, and the kids careened through the rink with him for a while until the rest of the players arrived for their scheduled practice.

Lauren with Raffi Torres and Jason:

We enjoyed watching the practice.  The NHL is in a lockout situation this year, so various players seem to have coordinated their own group practice sessions to keep their game sharp.  Our usual favorite Coyotes players were there along with a handful of players who play on other NHL teams.  I imagine Scottsdale in the winter isn’t a bad place to wait around for the NHL season to start!

After practice, Coyotes team captain Shane Doan chatted with Kyle.  As usual, Kyle was unimpressed with just talking to a player—he asked to shoot pucks with them on the ice.  Jason and Shane opened the doors to the ice and spent 20 minutes setting up the puck and letting the kids shoot it into the net, while staff and a Zamboni waited around for them to be done.  We got some pretty great pictures!

And a couple of cool photos that a bystander thought to take of us:

Many thanks to the LaBarberas, and to Shane Doan and the patient staff at the Ice Den for a really *cool* morning full of some neat opportunities!

The (almost) Indestructible Scorpion

Yesterday morning I was preparing Jenna's lunchbox for her to take to school.  I heated up a can of ravioli (mother of the year, yo!) to transfer to a keep-warm thermos, but as I took the bowl out of the microwave something caught my eye.

See that little orange critter in the top right corner?  He was inadvertently microwaved for two minutes with Jenna's lunch.  Then my husband nuked him for two more minutes ("It will be way easier to clean up exploded scorpion guts than it will be to get him out of there alive and in one piece") (that's true).  He STILL didn't die.

I won't go into the details of how he was dispatched, but please know that he's in a better place.  Scorpion heaven is filled with crickets and warm temperatures.  R.I.P., Chef Boyardee (what I named him).

Halloween Fun!

Ryan House is a state-of-the-art pediatric hospice and palliative care home in Phoenix for children with life threatening diseases.  But once you're a part of the Ryan House family, you're always welcome--and that's how we found ourselves celebrating Halloween over the weekend, a few days early!

The kids put their costumes on (Jenna was a leopard, Kyle was Han Solo, and Lauren was a black cat), together we set foot into Ryan House and that was the last time I saw all the kids together in the same area at the same time.  They all took off in different directions a moment later.

Jenna enjoyed the playground and the pumpkin painting craft table.

Lauren enjoyed the face painting and playing games.

Kyle wasn't interested in much other than convincing the staff to turn on the Wii (they didn't) and playing with the drinking fountain.

Do you like Lauren's black kitty cat costume?  It has an interesting story behind it.  Check it here.

City of Phoenix and Handicap Accessible Parking Enforcement

You're probably aware that parking in a handicap parking spot is illegal.  It is a crime.  It is just as much a crime if you park in that spot for 90 seconds while you sit in the car while the engine is turned on just as much as it's a crime to park in that spot for an hour while you go into a store.  You cannot maneuver your vehicle into a handicap spot, in any fashion or under any circumstance, if you do not have a handicap plate or placard registered under your name.  It is also just as illegal to block access to those parking spots--even for a few moments.  I know it doesn't seem like a big deal.  I know it's tempting.  I know that area of the parking lot is "right there".  So convenient.  It doesn't hurt anybody if you just hang out there for a little bit.  Right?

But it's illegal.  And the people you affect when you real-quick no-big-deal commit these offenses will be unnoticeable to you.  Know why?  Because they can't get out of their cars and shake their fists at you due to the fact that you're in or blocking access to their parking spots.

I am an understanding, patient person.  These are virtues I embody simply by way of being a parent of five year old twins.  However I do struggle to find patience or understanding enough to deal with my neighbors who block our access to parking spots.  Or who purposely choose to park in a handicap accessible spot "just for a minute" because it's the most convenient option for them.  Well, parking in a handicap accessible parking spot is the ONLY option for me.  It's not even for ME--not that that should matter.  Vulnerable five year old kids in electric wheelchairs are entitled to the courtesy and protection that handicap parking spots provide just as much as curmudgeonly elderly folks are (I love them, please don't construe that comparison to mean that I'm ageist--just trying to illustrate a comparison).  And it is NOT cool to even contemplate parking in these spots if you don't have to.  If you don't HAVE to park in handicap parking spots, why not rejoice in this freedom by parking in the furthest spot from the store's entrance?  Maybe it's just me but I think this is a BRILLIANT alternative!  Hike, prance, heel-click your way to the entrance from your treasured farthest-away-parking-spot.  Think of the calories you'll burn.  Why don't more people do this?  Why isn't this a thing?!?

This probably goes for all U.S. cities, but I can speak authoritatively that within the City of Phoenix it is crime to park in or block access to a handicap accessible parking spot.  There is such a thing as an Accessible Compliance Enforcement program here.  And they ticket the hell out of people who illegally park or block access to handicap parking spots.  This is a $288 ticket, you guys.  And they also can quickly determine if the handicap placard being used actually belongs to the driver of the vehicle who parked in the handicapped spot.  If the ACE unit isn't around and you notice a vehicle parked in a handicapped parking spot without an accessible plate or placard, you can note the license plate and report it via voice mail to 602-534-SPACE.  A warning letter will be mailed to the owner of the vehicle, which may not be as effective as a parking ticket but at least it's something.

So that's my public service announcement for the week.  It turns out that some people don't know this stuff.  I don't particularly enjoy writing such educational posts, but if I don't then who will?  Use your thinking caps, folks.  If your actions result in me not being able to park in the parking space I need to park in, you're doing it wrong.  Stop being assholes.  And three cheers to do those of you who aren't!  xo

Play ball!

Him:  You know, this field is named after Dan Haren.

Me:  Yes, I knew that!  Hey, funny story:  Kyle's first major league baseball game was on Dan Haren bobblehead night.  He wasn't obsessed with baseball then like he is now, but Dan's bobblehead is still in the lineup on his headboard.  Recently he asked me who Dan Haren is, as he read the name on the front of the bobblehead stand.  I explained that he used to be a Dback, but was traded for Patrick Corbin, Tyler Skaggs and Joe Saunders (Kyle knows who all these pitchers are, faces memorized).  Kyle asked me to turn the bobblehead around so he could see the back of the jersey.  He announced, "Number fifteen, Josh Bell!"  I told him no it's not Josh Bell, but his jersey number used to belong to Dan Haren.  Isn't that funny!  hahaha!

Him:  Sounds like he needs a Dan Haren bobblehead in an Angels uniform.

"Him" turned out to be Dan Haren Sr.  I think he's bringing his son's bobblehead next week to give to Kyle.  Color us humbled!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Another great night with Miracle League Arizona!  Unfamiliar with the Miracle League or have a special needs child who would benefit from playing a team sport?  Click here.

9/19

About to wrap up week four of Kindergarten and 3rd grade here.  Surprisingly, Jenna is really struggling with spelling tests--despite the fact that she spends a huge percentage of her free time at home reading voraciously.  I hate hate hate playing the role of taskmaster, but the time has come.  This chick is sooooo gonna be an expert speller in about two weeks.  I'm not saying I'm going to beat her (not going to help her spelling), but let's call it spelling test boot camp.  We've been lucky that she's been so motivated and independent in her school work thus far, so maybe a little struggling isn't so surprising.  I shall coach her until her scores go up and then we move on.

The twins continue to do well.  Their para at school is fantastic, and now that I've completed all the training to work in the classroom I'll be splitting my time between their two classrooms.  It will be interesting to watch  them in their classrooms, witness the dynamics

My left leg injury continues to be troubling. And by "troubling" I mean "my PT told me I shouldn't run but I did because he is not the boss of me and so anyway I ran quite a lot and now today I wish I hadn't but whatever".  Don't feel sorry for me.  But I just can't sit still.  If I can walk then I can hike.  If I can hike then can hike fast.  If I can hike fast then hey-o I can run.  That's when I learned that I shouldn't run.  I am hurting myself with every stride.  I am so frustrated.  It's not like I'm an athlete or anything, I don't know what I'm supposed to do.

Anyway.  Kyle was casted for new AFO's today, finally.   What design did he choose again for his AFO's?   A baseball, of course.

Kitchen Sink

Voila! And just like that, my orthopedic surgeon released me from the confines of my air cast.  I am to wear actual (non-flip flop) shoes for the remainder of my (future uninjured) days.

So what do I do?  Chill out?  Hang back?  Pop bon bons and watch soaps while the kids are at school?  Nah.  I pushed myself  And I lied to everyone I know.  I hiked.  But I went slow.  I didn't hurt myself.  I won't do it more than once a week (for now).  But I found my trail head and I hiked and NOBODY CAN TAKE THIS AWAY FROM ME.

Whew.  Sorry, I've been stir crazy though.  Just me, the dirt, the treks up the hills, and the sweat.  That's what it's about.  But see that's what it was all about that last time, until the snake appeared and caused the commotion which resulted in the muscle tear.  It's always something.  I did love getting out and getting active, though.  It's been too long.  I can't believe that my trails have been affected by the weather so much since my injury.  What a lazy loser I've been!  But I am so close to coming back, I promise.  Nothing makes me happier than letting my my Dixie Mountain Loop make me miserable and hate life to it's fullest!  (it really does, but in the best of ways.  I love to hate that stupid mountain.  stupid stupid stoopid.)

Kyle's foot ulcers have vastly improved.  I pretty much just Bactined the hell out of them and hoped that would be enough.  It was. Thank goodness.  He'll get fitted for new AFO's in a couple weeks.

Lauren spent all last week out of school with an upper respiratory infection, and then a stomach bug.  Though a stomach bug while on vacation is kind of preferable to a stomach bug at home, because Mom doesn't have to do the laundry.  In any case, her final puke was around Queen Creek on the way home and was perfectly manageable via hotel washcloth + suction machine.  She went back to school this week and has been in good shape.

One cool thing that happened last week was getting our Make A Wish scrapbooks in the mail.  Click here to check that out.  Super cool.  I have awesome friends.

Woe is Me

I tore my calf muscle about a month ago.  During a trail run.  I resisted seeking medical attention until a Phoenix Fire Department Captain who I adore looked into my eyes and said, "Promise me, you will call your doctor tomorrow."  Eh, I did.

Turns out I tore my left gastroc.  Whatevs.

Except...

I have been laid up for four weeks in an air cast.  It's summertime in Phoenix.  The insides of my air cast now have white salt lines up and down them from the sweat.

The cast slows me down.  I don't do slow.  I am chomping at the bit.

The cast drastically affects my wardrobe options (any type of denim is a no-go, far too hot), so it's been dresses and skirts all the time.  Except I have to bend over to get the wheelchairs out of the van, so the skirt has to have shorts underneath.  Which means I wear golf or running clothes almost everyday and the ironic part is I would so like to golf or run everyday and I'm already wearing the uniform, but I can't.  UGH

I hate it.  Hate it all.  Well, I actually love everyone at my physical therapist's office, but I hate the sitting down all the damned time.  And that's my attempt at a joke because I never sit down.

Lauren. Gah.

Lauren ran over a classmate on Thursday.  She was incredibly upset.

To those who have personal experience with young children in electric wheelchairs, you know that many kids react extremely to wheelchair accidents.  Lauren is one of them.  She got so upset, was so beside herself that she was taken to the school nurse because she was aspirating her tears/secretions and struggled to breathe.

That's Lauren.  She wasn't safe to take the bus and so I picked her up from school.  I think that when she runs over someone, she hates the fact that she's in wheelchair just as strongly as she blames herself for the accident.  Does that make sense?  She's a perfectionist, so making a mistake is upsetting.  And I could be wrong here, but I get the sense that while she embraces her powerchair as her "legs", she is ultra-aware how different her chair makes her from her peers.  And she resents it.  I don't know, I'm all new at this.  Maybe I'm wrong.

In any case, her hysteria around this accident (after 2+ years in the public school system, this is her first incident) caused such tears, such an increase in secretions that she may have aspirated.  Now her lungs are junky, and they're never normally junky.  On top of that it seems she's caught a stomach bug, because she hasn't kept anything down for the last 24 hours (exactly....24 hours).  And we're out of town.  Which reminds me, the Numero Uno thing I don't want to ever have to do is take an SMA kid to an E.R. in another town.  Sorry, Other Town--I'm sure your facilities are great and all, but we are too complicated to subject you to us.  Be thankful that I'm holding out until we get back home.

On the other hand among the few things I technically cannot do to my kids is start an IV.  And that's what she'll need if she's not drinking water by tomorrow, so.  Here's hoping UMC's IV team has had their 5 Hour Energy shot and brought their A game, because she is not an easy stick.  REALLY hoping this doesn't have to happen, but I am famous for thinking my kids are fine without professional intervention when they are not.

She hasn't upchucked in over two hours though, so we may be in the clear.....here's hoping.

AFO Woes

Kyle's feet are very sensitive.  He's had ankle contractures since forever (very common in SMA patients), but when he had tendon release surgery last summer they became even more sensitive for some reason (or he became more anxious/tearful about us handling his feet).  Therefore I just give him sponge baths and his AFO's (leg braces) only come off about once a month, for short periods of time.  The taking off/putting on is just too traumatic, for all of us.

I last put his AFO's on a short ten days ago and when I took them off earlier this week he had significant pressure sores.  Ulcers.  Broken skin, blisters, oozing.  I'm amazed--he never complained about pain at all.

And I'm completely shocked and disheartened.  How does something that is supposed to help him hurt him so badly?  I betadined the hell out of sores like our nurse friend and the wound clinic suggested.  The blisters have improved, but I still am not sure that we won't have to take him to a dermatologist, or the wound clinic.

Have any of you experienced anything like this?  I have been beside myself, kind of full with guilt.  Blah.

Make A Wish--Kyle Edition

Kyle finally made his Wish.  In a real way.

As I changed his clothes a few weeks ago he was gazing at the poster of Chase Field next to his bed--while his Arizona Diamondbacks bobbleheads and other paraphenelia gazed down upon him--and he turned his head to me, furrowed his brow, and said, "Mom.  I just want to be a real baseball player.  Can you call Make A Wish and tell them?"

That's when I knew.  THIS was his real Wish.  We had been waiting and waiting.  I suspected it would be something related to baseball, and he has made remarks about what his Wish would be over the last year since he became eligible for a Wish.

But never did he seem so thoughtful--so wistful--as when he turned his face to me and I knew deep in my heart that THIS is his Wish.  "You only get one Wish, you know.  You really wish to be a real baseball player?"  His reply was affirmative.  I consulted Chris, who agreed that this was the right decision.

I contacted Make A Wish to tell them that Kyle was ready for his interview.  Kyle--just 5 years old--maintained throughout his interview that he just wanted to be a real baseball player, so his commitment to his Wish decision was clear.  And then a Dbacks game happened to start on TV here at home while his interview was happening, and that's when the interview essentially ended.  Nothing distracts this kid from a Dbacks game.  Sometimes I wonder if the players know that there are people like Kyle depending on them to make their day by knocking one out of the park.  (Our guys do their best to do that at every at bat, I know that. And they almost always deliver!)

After further questioning, I've determined that Kyle's definition of being a "real baseball player" involves swinging a standard wooden bat at a standard ball.  He would need help to do that, but I have full confidence that Make A Wish will make it happen.

(Technically, we don't know how or if Make A Wish will or can grant his Wish, but we're on the edges of our seats to see how it all goes down.)

New School Year! Hooray? Yes! Hooray!

We've been experiencing major technical issues with the twins' afternoon school bus.  Our morning bus is big enough for their chairs and comes with a well-seasoned team of driver + aid, but the afternoon bus was a different bus and new folks to train.  It's now been resolved, but it was very stressful around here for a few days.  If Google can be trusted, then the twins' electric wheelchairs together cost more than the average school bus, which actually does not make me feel any better about the average school bus.  I thought they were more expensive than that, and believe me they're still really expensive.

On the plus side, they LOVE kindergarten!  And the school seems to be adapting to them very well.  Shout outs to the accepting parents who dote on them and us and make me feel so much more comfortable with our new school situation.

I'd be remiss to not acknowledge their teachers and aide.  I am confident that they are The Best.

Running the Bases

Kyle wanted to "run" the bases at Chase Field as his Make-A-Wish.  Thankfully, the Arizona Diamondbacks let all the kids run the bases every Sunday.  Now he gets to think about a different Wish!

Humpty Dumpty. Again.

One year minus one day ago, and she fell in her high chair to the floor again.  364 days since the first time this happened.  Firstly, the poor, poor girl.  Secondly, this is the last time she will sit in this high chair.  Nothing against the high chair, but a 30 pound kiddo repeatedly pushing her body against the high chair tray will eventually cause the high chair to tip over.

It's time--it's BEEN time--for a proper feeder seat for the twins.  I admit, the absolute hassle with insurance approving this has been the primary reason why I haven't pursued this yet, but I'm pretty sure our insurance would rather these kids sit in thousand dollar chairs than pay the hospital bills when they tip over on the tile floor and break bones.  That will not be pretty, or cheap.

The Tiger Serval HighLow seat--anyone have experience with this?  I want something on wheels which can move up or down, and has a tray.

Also, proof that she is happy and healthy.  But she REALLY needs a new feeder seat.  The one above costs $2,000--does that make one iota of sense to anyone?  It's not even mechanical!  It's just a chair on wheels!  Welcome to our world.

Catching up.

Yep, I realize that it's been 1+ months since I've updated anyone on the kiddos.

There's actually not a lot of good news.  Well, I take that back--they are happy and healthy today, so that is wonderful.  We enjoy days like these.

The good news is that flu season is over and nobody here caught the flu.  Yay!  So that means it's time to check in with all of their doctors.  If there are procedures or surgeries on the docket, we want them to be scheduled for the summer break before the school year starts.

Good news is that they have no surgeries or procedures to endure this summer.  The bad news is that they will eventually.

Our (much beloved) orthopedic surgeon reports that their spinal curvatures are at 41% and 51%.  This is a significant increase from December.  Increased time spent in their TLSO's each day is the first prescription.  Spinal rod surgery is the next solution.

Our pulmonologist wants them on their bi-pap breathing machines at night.  Am interviewing ad firms to find a tag line with which to sell the twins on wearing big masks on their faces--held in place by big, uncomfy straps--while said machine makes loud noises.  Why does this have to be so hard?

Pulmonologist wants some baseline information on their cardiac systems, so we're adding cardiologist appointments to the docket.

Our G.I. team is dissatisfied with the twins' growth.  Nearly one year after their g-tubes were surgically inserted, Lauren is fantastically thriving while Kyle is still struggling.  Kyle is also regularly vomiting at night during his "slow drip" from his feeding pump when he wakes up with knee pain and cries.   We're frantically trying to find a solution.  In the meantime, the twins are nearly five years old and she weighs thirty pounds and he weighs twenty-six.  Not good enough.

The neurologist is just in awe.  I'm not sure he's ever experience such a loud exam room than when the Byrds are there to see him.  We love our Dr. Bernes.

Our surgical consult regarding the g-tubes is still pending.  We were supposed to visit Dr. Graziano this week, but Lauren was sick and junky and I didn't have it in me to haul them downtown and drag the 30-pound Cough Assist too.

I've also been meeting with their new school in regards to IEP's and all the accommodations they'll require as they transition to kindergarten.

That's what I've been up to, in case you thought you were busy.

Lauren's Wish Trip

I apologize for my absence.  My old laptop died months ago and I finally got a new one, and trying to keep up with all my passwords has been challenging.  The internet is so hard sometimes.

As you may already know, we made it to Disney World and back last month.  I still have some loose ends to wrap up in regards to that trip, but you inquiring minds can check here for a recaps and photos.

If anyone wants details in regards to the accessibility of the Magic Kingdom or Give Kids the World, ping me.  The Disney World website is VERY detailed in which rides are accessible, but I am happy to elaborate if anyone has a specific question.

Additionally, Southwest Airlines featured Lauren's Make-A-Wish story on their blog.  Read it here.  Pretty cool, eh?

#SSfO (Such Suckers for Ollivander)

To catch you up:
Kyle is pooped out. (literally)  (mostly)
Lauren is well.  (mostly)  (still hoarse, but otherwise mostly okay respiratory-wise)
Jenna is living every 8 year old's dream:  to skip a week of school and hang at Disney World and the Wizarding World of Harry Potter.

Speaking of the latter, I have a few moments to finish uploading this amazing experience at Ollivander's Wand Shop at the Wizarding World of Harry Potter.  There is a long line to get in, but for good reason.

The set is pretty dark, but you may spy someone familiar despite that.  Witness the magic:

Poop today, Disneyworld tomorrow.

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

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

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

Getting Prepped for Disney World!

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

She *might* be getting excited.

Zip Lining

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

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

This many.

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

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

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

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