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Wednesday, July 28, 2010

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

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

Without further ado:

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

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

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

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

Kids' bathroom. I don't know why I'm sharing this. I guess because it's one of the few completed rooms in the house. Enjoy.
Official move in time is this weekend. Please remind me why I perpetually choose to move in the freaking hottest, muggiest time of year?

Hope to see you soon, sis.

Sincerely, me.

Tuesday, July 20, 2010

Billiards Table + OT = Fun For All!

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

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

Sunday, July 11, 2010

Boy Meets Chair

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

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

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

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

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

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

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

Saturday, July 3, 2010

Wheelchairs and Flooring and Sex.

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

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

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

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

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

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

House, yadda yadda and some more yadda

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

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

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

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

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