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Friday, July 31, 2009

It's (Tea) Party Time!

Yes, I ventured out back to our storage shed, in 110 degree heat, uphill both ways, to unearth a princess tea party set yesterday. It was an absolute hit. Kyle seemed to enjoy it the most, which is why I'm sad that there apparently is no such thing as a macho tea party set at the Disney Store.



Tonight, I'm going on my first "girl's night out". Yes, universe, I've never admitted this before, but I breastfed the twins until they were two. Like, until a couple weeks ago. What a secret tree-hugger I am, huh? My superpower has been lactation all this time and you never even had a clue. So what this means is that I haven't partied like a proper party animal in three years.

In anticipation of a doozy of an evening, I've planned ahead and will spend the night at a girlfriend's house. This means that I am leaving my children exclusively in the care of my husband for about 18 hours. My husband who travels for business regularly and therefore isn't home enough to have well-honed bedtime routine skills. I am certain to enjoy myself tonight, but sadly (not really) I can't say the same for my husband. Let's just say it will be a character building evening for my family left here at home. And personally, I'm just hoping for no character building on my part--it would likely involve one too many margaritas and hugging a fake potted tree at the doorway of wherever it is we go tonight. If you're in the neighborhood, feel free to stop by the house and bathe or feed a child. Or my husband. And I'll have a drink for you!

Wednesday, July 22, 2009

Kyle's Turn!

Poor Kyle kept getting startled (to the point of breaking down and weeping at the injustice of humanity) everytime we yelled at him to "stop! stop!" while he tested the demo powerchair inside the house. So, when the sun hid behind the clouds and the breeze kicked up yesterday evening, and it no longer was 108 degrees (maybe it was 105? LOL), we lugged the chair outside and let him at it.

I love watching the pleasure on his face as he gets to know his new wheels. And it's also humorous that he evidently has something against going forward--he wants only to go backwards or in circles. A stubborn boy, that one.

If you're reading this in Facebook, there's a video below which doesn't feed through from Blogger. You'll have to click on "View Original Post" or go to Videos to find another video taken in the same session as this one.

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I also have a new, great video of Lauren (mostly) obeying my commands to stop/go/turn in a circle, but it's long and Blogger can't quite manage to upload it. But it's on Facebook in my Videos, so you may be able to see it there.

Monday, July 20, 2009

What $30,000 looks like in the hands of two year olds

These pictures say so much, but the words they speak are not, "insurance finally approved the requests for powerchairs", but instead it's "we got the demo chair from Permobil and we get to keep it for two weeks!"





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Saturday, July 18, 2009

Harry Potter and The Hangover (spoilers)

Don't ask how, but my husband and I were able to see two movies in one day today. Thoughts:

Harry Potter
1. I so love Harry. Really, he's grown up so. And he has a thicker neck than previously. And he's clean shaven. And he rocks the ringer-t, no?

2. God Bless Harry & Hermione's relationship. How have these two never hooked up? This movie (if not the book long ago) solidified that they've never been romantically interested. Why not? Hermione = sweet, cute smart, Harry = sweet, cute, courageous.

3. Ron. Finally. I've come to begin to reappreciate your hotness potential. You have shown that you have guns. And in this movie in particular, you are apparently a good kisser. And decent Quidditch player. I still do not think you are deserving of Hermione, but Love loves what it loves.

4. Alan Rickman. What, 20 lbs? God bless you, too, but really, it seems strange that your face doesn't age in these movies yet your body does seem to. Lose the pounds, gain years. Yes, welcome to a chick's world.

5. Minerva McGonagall--looked like the walking death. She's always been my favorite professor--even above Dumbledore--but please, please have a butterbeer and some eye cream. Me loves you. Wrinkle cream loves you, too.

6. Lavender. Ohhhh, girl who plays Lavender. Well done, my dear, well done! You are adorable and loveable and did Lavendar justice. Bravo!


The Hangover
1. My husband "assures" me that his Vegas bachelor party was "just like The Bachelor". Minus the missing tooth business, or the tiger business. Huh. Thanks.

2. Rachael Harris deserves a freaking Oscar. Please--Rachael Harris as the nagging bitch who is completely serious that her boyfriend better not stand up for himself? My description of her here does her no justice. Watch her. Love her.

3. There were two hot dudes in this movie. I would like to get to know them better. For real. Never seen them before, never heard of them before. Let's remedy that, shall we?

4. Heather Graham, will you ever not be the adorable Vegas-ite who schools the newcomer boy? Swingers--check. Boogie Nights (was that in Vegas?)--check. The Hangover--check. We love you. Mostly in Swingers. Can we stop playing the....hey wait, just realized your Swingers role was actually set in L.A. Okay, you've only played one Vegas girl. I'm an a-hole. Whatever. You deserve a lead/primo part, eventually. Best of luck, mwah.

5. Did I mention the hot guys? imdb.com claims they are named Bradley Cooper and Justin Bartha. Yeah, still never heard of them. Oh, but I will. I shall devote myself to renting from iTunes any movie they've been in, and watching any future movies of theirs. You thought I was obsessed with Twilight? Ha, just wait.

6. Bare "twig and berries" in an elevator next to old lady's face is never acceptable. There is no exception to this, oh photos of end credits, you.

Friday, July 17, 2009

Sponsor A Mile for Gwendolyn

First--please consider dropping ten bucks to sponsor one of Gwendolyn's miles. Her family is trouping all over America this summer to raise money for SMA research. Their goal is to raise $50k, and they've raised well over $35k. Go find where you wrote your PayPal password (or just go get your credit card) and donate at sponsoramile.com. Gwendolyn has SMA type 1, and her parents have proven tireless in their efforts to advocate for her health and quality of life, and are excellent role models for the rest of us.

So, the babies have had some doctor appointments lately. They saw their GI doctor, who is concerned about their growth and nutrition. We're working with a nutritionist to try to cram a lot more well-balanced calories down their throats, but things aren't going so well. Every idea involves the twins drinking Pediasure or some equivalent, and they refuse them all, no matter the flavor. It is disheartening. I wish I could explain to them what a G button is--an invasive, surgically installed feeding tube--and explain that this is what we'll be forced to consider if they do not start eating better. Lauren is something like the 3rd percentile for growth, and Kyle is at 0 percentile. This means that 97% of Lauren's female peers and 100% of Kyle's peers are bigger than they are. It might just be mildly concerning if they were otherwise perfectly healthy, but fighting against the side effects of SMA most efficiently requires a good nutritional foundation, which these babies clearly do not have. It's been a bummer lately. Blah.

Kyle's also seen his orthopaedic surgeon. I love Dr. Segal. He loves kids, and seems to like parents pretty okay, too, which can't be said for lots of doctors. But he had to give us the bad news that Kyle's hip is dislocating. The muscles can't keep it in it's socket. Thanks to SMA. Seven months ago, his hips were about 30% dislocated (subloxed). Last week, they were 70% subloxed. So long as it it's not causing Kyle pain, the plan is to do nothing about it, since he'll never walk anyway. There are surgical solutions to this problem, but Kyle would have to be a bit older before we consider that. We know at least one other child who has had this surgery, and it doesn't sound like a picnic.

As for wheelchairs, we are currently in appeal #1. I don't want to think about it too much because I am seriously going to have a coronary over the stupid emm-effers at the insurance company, but suffice to say that the decision makers there are quite certain that the twins are impossibly young to be able to manage their own power wheelchairs. But they are willing to buy them a stroller. Oh, really? You'd prefer to give us a $1,500 special needs stroller instead of the $25,000 (times two kids) Permobil K300 PS Junior? What a shocking turn of events. Whatever. Readers, just don't expect me to update super often about the status of all this equipment. I'll let you know when we start the next appeals process, etc, but thinking about the minutiae of this complicated bureaucratic nightmare is taking minutes off the end of my life.
Our beloved physical therapist, Gayle, loaned us this Tumble Forms chair to try out with the twins. She delivered it to us yesterday, and we are in love. We're ordering our own versions (for the lowest available price of $239) for the twins, and I, for one, am thrilled. I feel like I spend half my life sprinting over to the family room to pick up a slumped over twin--a chair like this would allow them to play on their own and be belted in enough to keep them safely upright. It's almost as good as winning the lottery.


Okay, that's all for now. Don't forget to sponsor a mile for Gwendolyn. Peace out.

Saturday, July 11, 2009

London, Baby! (Well, eventually.)

Okay, that's it. Hubby and I are dead set on visiting England in 2010. This involves so many logistics with the kids that it's not even funny. But if we don't get the hell out of Dodge for a few day, we're going to go to the looney bin sooner rather than later.

Any tips on what to do on our third trip to London? We've already done the super-touristy stuff--Jack the Ripper walking tour, Windsor Palace, Bath (would love to go back there, though), Stonehenge, Oxford, Stratford-Upon-Avon, Warwick Castle (ditto Bath comment), Harrod's, Tower of London, Westminster Abbey, 10 Downing Street, Hyde Park, etc. Any other gems of places you can think of? We were delighted with Warwick Castle when we visited, and would love to visit more, I think.


What about Wales or Scotland? What are the logistics in getting there from the London area? We haven't seen Canterbury yet. Nor Manchester. Nor the white cliffs at Dover and such. Worth the time? We're contemplating visiting my childhood friend Linda in Paris via a 2-day Chunnel pass (or whatever they call it). (This is your warning, Linda--we may be in your neck of the woods next year--if you're still living there by then, anyway.)

Too bad we don't have the choice to see Michael Jackson at the O2 while we're there. Ok, not that Chris would ever agree to spend money on that kind of thing while we're on vacation (or on Michael Jackson at all), but still. It would have been nice to have the choice.

You think there's a Harry Potter walking tour? Perhaps a soccer (futbol) stadium which not only serves beer but also allows you to drink it at your seat? No? Well then, it's going to be a long trip.


Also, we only stay at Hilton. I'm thinking the one at Covent Garden, again? The Paddington property was super-convenient for the train to Gatwick airport, but the rooms were t-i-n-y. And the Hyde Park Hilton made us sign waivers before they would let us open our window, promising we wouldn't jump (??)--plus, there weren't many places within walking distance to eat, and we would have died before paying eight POUNDS for a burger from the Hard Rock Cafe near there. Any other hotel suggestions?

So, what else? I'm already gathering up my passport, Boddington beer, Harry Potter books, and Clark's walking shoes. Getting super excited for a trip 9-12 months from now which is barely a twinkle in our eyes...

And in celebration of London, one of our favorite places on the planet, I leave you with this:

Thursday, July 9, 2009

Our Fabulous July Fourth Weekend

It's taken me too long to get my hands (hard drive) on the photos from last weekend, but I'm finally ready to share. I wish I had more! I thought we took a ton, but I guess not.

We drove two hours south to Tucson, to celebrate July Fourth with my whole family. My sister lives there, but she and her husband stayed at the hotel with us just to feel like they were getting a way a little. In fact, her husband's whole family was in Tucson for a visit, so the whole gaggle of us took over the resort.

We stayed at the JW Marriott Starr Pass--one of our few favorite hotels in Tucson. I also found out that they're on Twitter -- @JWStarrPass. They have a large pool area, several bars in the pool areas (awesome), and a fun water slide and small lazy river to go tubing in. It was a ton of fun for Jenna, who was in the pool practically all weekend, it seemed. The resort was at capacity, and the pools were crazy busy, so the twins didn't get to enjoy their head floats at all (there can't be splashing or many waves when they're in the head floats)

We ravaged the breakfast buffet each morning--that place knows how to make pancakes. We also enjoyed the resort's BBQ buffet both nights that we were there. I got a small Eegee's fix (just a sandwich--but so awesome) for lunch. The twins napped like champs and slept at night like champs, too. Plenty of adult beverages were appreciated by all the adults all day and night on the Fourth. And everyone applied enough sunscreen, so we have no painful burn stories to share--woo hoo!

We didn't get any great pictures of the fireworks, or the kids watching them, so you'll have to use your imagination. But the twins LOVED the fireworks on Saturday night, and kept shouting, "More! More!" long after the show was over.


At the pool:

Right before Fireworks--one tired 5 year old, and a blue-faced little boy who dove into a patriotically frosted (read: blue) cupcake.

Thank the heavens for Bumbo chairs and portable DVD players! This is why we can never fly anywhere--too much random stuff to bring with us, wherever we go!



The JW Marriott there has a Nickolodeon theme nearly every weekend all summer. The kids get to meet Dora and Spongebob in the lobby in the mornings--a big hit with our kids. These pics were taken as we were loading up the van to drive home on Sunday.



Oooh, pretty!

There's a contest I've entered to win a necklace from silverloveletters.com. And I can get an extra entry into this contest by posting about it here, so I interrupt my regularly scheduled programming to pimp out Silver Love Letters and the Fairy Blog Mother! :)




I adore this birthday charms necklace. Each charm has the specified birthdate in 6-digit format. And it's reasonably priced at $29.

This contest ends on July 22, 2009. If you want to compete against me (LOL) for the pretty monogrammed necklace at stake, visit http://www.fairyblogmotherblog.com/2009/07/silver-love-letters-giveaway.html Cheers!