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Monday, September 28, 2009

A Disney Store is Really Just a Disney Store.

Today was the grand opening of the Disney Store at Arrowhead Mall. It also happened to be a day with no school for Jenna, for some strange reason. So the four of us arrived to the Disney Store 20 minutes before it opened, which was CLEARLY ninety minutes too LATE.

So after waiting 20 minutes for the store to open, we waited another 20 minutes for all the crowds in front of us to get in and out of the store in order to avoid a citation by the fire marshall for having too many people inside. And then? We raced through the store in 5 minutes so that we could wait in the checkout line for 25 minutes. And guess what? There were no extra special one-day sales, and all the merchandise is pretty much the exact same stuff they had three years ago. Even so, that didn't get us down. We were at the second-most Happiest Place on Earth. At least the children all got free mouse ears, and aren't they completely thrilled about that?

We hung out with the Felix family yesterday, as well as the Harmans and another family whose new baby was just diagnosed. Alexa Felix has SMA Type 1, and the most gorgeous light brown curls in her hair that I've ever seen. They all bonded over Blue's Clues, while the adults bonded over pizza and football and beer.

Saturday, September 26, 2009

Way To Grow!

The babies had a pre-flu season pulmonary checkup last week. All their pulmonary stuff is fine. And that appointment wasn't an official weight check, but they got weighed on the very same scales as they do on official weight checks and they have gained 1.5 pounds each! We are practically beside ourselves. They started off this year at around 22 pounds and 18 months old, then were stricken with RSV and lost a lot of weight (and strength, blah), and we haven't been able to get back up to where they were pre-RSV. That's a problem with SMA kids, that they just don't have it in them to get sick and bounce back. They have no energy stores, nothing to tap into when the going gets tough. So over the summer, the highest that either of them had weighed was in the low 22 pound range, and 6 weeks later (today) they're mid- and high-23 pound range! We are so thrilled. I personally attribute all of the gain to the use of Duocal, a prescription food powder that I add to any liquid or soft solid they eat. A friend of ours had an unopened can of Duocal that they didn't need, so they gave it to us. We've been using it for about the last 3 weeks, and the proof is in the pudding that the twins ate after dinner tonight. Literally, the Duocal pudding concoction is what is fattening them up. Hooray! Who doesn't love a chubby baby?? For all my size, I can't seem to make those deliciously chubby babies I see everywhere. We shall be talking to our GI doctor about getting some Duocal of our own, and also about other medicinal options that I want to explore before we go to a g-tube.

So, have I mentioned that I ran into a door? Yes, a fitting room door. But this was no ordinary run-in. I was walking, full speed ahead, into a Kohl's dressing room and, err, misjudged where the door was actually located, and walked myself at about 30 mph into the door frame. This was weeks ago. It caused a bruise that was dark green and black and ran the width and length of my entire bicep (admittedly, my biceps are not overly large) (let's be honest, if I didn't have children to pick up all day, my biceps would have atrophied by now to allow only my fingers the ability to type and my arm to lift a sandwich to my mouth). So ever since this "accident", I have had severe pain in my upper arm where the injury was. I finally saw my doctor about it, because the pain is just ridiculous and also because my mom guilt tripped me ("It could be a stress fracture! You need an x-ray!"). Indeed I earned myself an x-ray (and scored a flu shot, woo hoo!), and we've ruled out a stress fracture based on the x-ray report. So what we're left with is that I have an intensely painful bicep/humerus and there's nothing I can do except wait it out. And seriously? I want to cry everytime I reach up to my sun visor to click open my garage door, it hurts so bad. Nighttime is the worst for me, because while it hurts all day, too, it's at night while I'm sleeping that I evidently throw my arms around all over the place. The pain wakes me up, which is why I have commandeered all the leftover decent pain killers in the house to use for bedtime. Score!

Jenna had her Very First Ever School Picture Day yesterday. Could it be from Lifetouch, the very same company who took all of our school pictures since the beginning of time? Indeed, it is. I had that Elton John tune The Circle of Life in my head as I wrote the $30 check for the mid-tier portrait package. Jenna looked adorable in a new pink dress, and when she got home from school, I was relieved to hear that kindergarten pictures were taken first thing in the morning, before anybody had time to give each other nugies or hang upside down on the monkey bars or anything else which would adversely affect Picture Day Hair.

We hung out at an MDA event at Safeway administrative offices in North Phoenix on Thursday. Those kind folks at Safeway had a "Dress Down for the MDA" fundraiser, where the office employees paid some amount of money as a donation to the MDA to gain the privelage of dressing down in jeans on a designated day. They raised thousands of dollars for the MDA. So I traipsed the babies up and down the cafeteria, showing them off in their adorable matching Hanna Andersson outfits (blue/yellow beach ball striped sleeveless romper and dress, in case you're in the know about the Hanna summer catalog). Kyle charmed the danged pants off of all the ladies. Seriously. If I had a dollar for every woman who commented on how flirty he is, or what a ladies man he is, or he's so coy and charming!, I would have about $30 after today. MDA events are such fun. I love showing off my babies.

This weekend, I have finished up my project for the Arizona Walk-N-Roll to Cure SMA. My project was to cold call local businesses and beg for their money. We have a couple weeks for the money to start rolling in, so here's hoping that it's a success. And if I have your address? There's a 100% chance that you'll be getting a letter from my family to sponsor our team in the Walk. All proceeds benefit Families of SMA, to fund additional research. Let's cure my babies together, shall we?

The twins have flu shots next Tuesday. Should be good times. Jenna's flu shot is two weeks later. Will we be getting the H1N1 vac? Good question. At this time, we will not. We contacted our specialist and they are not recommending the H1N1 vac for any SMA patients at this time. Interesting, eh? I mean, they could change their minds, but I really expected them to respond with a "Duh! Of course they should get the H1N1 vaccine!" and they surely did not. We're relieved, because we are not 100% comfortable with the H1N1 vaccine, and while we would have gone ahead with it had the specialists urged us to, we would have. But for now we can put off making that decision.

Sorry to have such a boring update. I'm not feeling so entertaining tonight. Just still so happy that the twins are gaining! WOOT WOOT

Aren't we just a hoot?

Tuesday, September 15, 2009

A quick check-in, so that I don't miss Mad Men

Just doing a drive-by, because I know my sister reads this (even though she never stoops low enough to comment) (and also won't move up here closer to us to know the details of our lives first hand) (and also because she won't join Twitter or Facebook and therefore has NO idea what's passing through my mind fifteen times per day in 140 characters or less):

1. Twins are doing well. We're on day 4 of trying out a new additive to their food, something called Duocal. It's super expensive and our doctor hasn't even mentioned it. We got our can of Duocal off the Black Market, but we're impressed thus far. We see all their doctors this month for general check ups, before flu season starts, so here's hoping they've put on some ounces!

2. Kyle And His Undescended Testicles--These Are The Days Of Our Lives: Yes, he does indeed have two of them (an anatomically appropriate number). But they're both located somewhere along his waist, which, if you're a testicle, is evidently not the most favored location. He needs surgery to correct this. Which means general anesthesia. Which means we don't take it lightly. They can't schedule him until late October, but we refuse to walk into a hospital in full health during flu and RSV season, so it will have to wait until Spring. And because in 16 years, I'm pretty sure my son will be grateful that his mother waxed on and on about his boy parts for an extra 7 months "just to avoid the flu season".

3. We're able to do more and more evening wheelchair training, now that it's not one-hundred-and-crap degrees before the sun sets. Kyle is making great strides (figuratively speaking). Lauren is a speed demon. Am price comparing steel-toed boots.

4. No progress made on the insurance approval for the wheelchairs. Insurance companies have no idea who they're dealing with. Okay, they probably do, but they have no idea how much and how fast I can talk in real life. And also? How I can use Google satellite maps (to determine your location) and published studies to really mess with you and your preconceived notions about how intelligent my kids are and how much they need these powerchairs. Like, yesterday.

5. The offer we made on a house on the west side was accepted. Did I mention this in a previous post? Well, the home was formerly used as an assisted living home, which means it's wheelchair accessible, woo hoo! But evidently, the current owner owes a lot more than what we're paying, so his lender still has to approve the sale.... could take 6 months... and even then, we may not even be approved. So our Realtor is all for us continuing to aggressively house hunt until the banks approve the sale. If anyone needs a 5 bedroom single level in north/northwest Phoenix, talk to me first. I don't charge any commission, and I probably know more than your Realtor.

6. I convinced so many people to donate to my MDA fundraiser that I am entered to win a Phoenix stay-cation weekend! Two nights at a posh Scottsdale Hilton, including a dinner gift certificate. Grandparents? Get ready for some company soon (all your grandchildren), because I'm feeling lucky! Got extra cash? I have a good cause:

That's it. But here's a photo to make reading all this worth your while. I hope. Jenna + stickers + Lauren = this.

Phoenix--where should we live??

I'm desperately searching the MLS to find more potential homes for us. We need a single level, 5 bedroom home that has a backyard big enough to fit more than five bodies into.

I don't need you to tell me that I should buy YOUR house, but I do need zip code ideas. I already have in mind the following zips, but what more can I include in my searches?

North Phoenix:

Norterra, Cave Creek, Anthem:



We've already made an offer on a house, and our offer was accepted. But it's a short sale, and the seller's creditors could take 6 months to decide whether to approve or not approve the price we offered. We are not willing to offer more money for this particular house, and our Realtor is encouraging us to continue our house hunt in case we can find something better until the seller's creditors approve the sale. We can back out of the sale at anytime until the banks approve it.

We're focusing our searching pretty much along the Loop 101, from where we live now all the way down past the Arrowhead area, and then north to Anthem. Any ideas on zip codes I've missed?

Monday, September 7, 2009

Our 15 Seconds of Fame

We made it on TV for a few seconds this morning. Channel 3 was running about an hour behind, but the babies hung in there for us and we got to say a few words about how the MDA is financially assisted our family with the babies' AFO's.

Our friends the Keeney family met us there, and the kids all had a blast. The clowns, with their balloon art and face painting, were the real stars this morning. I grabbed a business card from them, because Jenna is so in love with Juji Fruit The Clown that we may have to hire him for her birthday party next year.

There lots of companies who had booths and were giving away free food and gifts. Rubios and Chick Fil A and Famous Daves BBQ were favorites, plus Verizon and Hubbard Swim School, Bass Pro Shops, Petco, Home Depot, the list goes on. Riverview Toyota is really a standup firm, and not actually too far away (Loop 101 at Dobson, just east of the Loop 202). They hosted the satellite event today, where we were at, and they were just great. It was a great time, and the kids had a blast and we really appreciate their involvement with the MDA.

Little does Chick Fil A realize that these two vastly prefer McDonald's chicken nuggets.

Grandma and Kyle

Jenna and the completely sane clown posse.

Jenna with Ariel, courtesy of Juji Fruit.

Waiting for the cameras to turn towards us....

Jenna and her new BFF, Juji Fruit The Clown

Chris with his new BFF, the A-Team van. K.I.T. is in the foreground.

Sunday, September 6, 2009

Money and Telethons

Quick! I'm in the running for raising the most money for the Phoenix chapter of the MDA! Help me regain the lead I had in week 1 (five weeks ago) by giving me your money!

Whew. What in the heck was that? It was like some stranger came though my blog post in a drive-by, begging for money. That is some crazy talk. Pardon? Huh. You mean that because my babies get money from the MDA that it makes sense for me to whore out my fundraising site on my blog? I'm not saying I disagree, I'm just saying maybe someone could run it by me first. I mean, 3 whole people read this blog each week, and I really need to increase the perception of my babies' cuteness a little more before I start pimping them out for the MDA. Wait, who am I kidding? They're cute enough. You know it. Now give me your money. Via that link above.

Speaking of money and the MDA, guess who will be on Phoenix Channel 3 tomorrow (Monday) morning, during the MDA telethon? Jerry Lewis? Good guess. Charro? Yeah, probably. Firefighters? You betcha. Also? Me. For real. I am so not joshing you here. Chris and me and the kids will totally be the best 60 seconds that the MDA Telethon has ever seen! Set your Tivo--channel 3, sometime between 9:40-10am. I'm figuring that when the Channel 3 people get past the cuteness of my adorable children, and how handsome and well-spoken and intelligent--not to mention spikey-haired--my husband is, they're totally going to realize my heretofore unrecognized talent for being sly and clever and dryly sarcastic on the air, all while sounding totally professional, and also for being very interested in critical lifestyle choices such as golfing, wining, and parenting. And also, for how great I can make a $16 dress from Target look. I could be their on-air (and highly paid) bargain shopper correspondent. Right? Or anytime they need someone funny and interesting who didn't actually graduate from U of A (because everyone who is funny and interesting usually has graduated from UA, but not me, I only went there for two amazing years. Two years from which I doubt Tucson has recovered.).

Just please, nobody tell Channel 3 that I really just watch Channel 12. I'm sorry, but way back in the 90's, there was a huge local television switcheroo where all the channels switched affiliates, except for Channel 12/NBC. As it turned out, I could never keep track which channel was which network, and so I just gave up. I watch Channel 12, just to keep things simple.

Also, big news at the Byrd house--we made an offer on a new house. It's a major short sale, so I don't want to tell you too much about it because I don't want you to become too attached to it. But really, it's perfect for us. It was literally made for people in wheelchairs. It has a roll-in shower in one bathroom. No steps. Wide hallways. Hardwood floors (wheelchairs tear up carpet, eventually). Ah, I've said too much. I bet you're getting attached. Stop it! The bank will probably never approve this sale, because they're going to lose way too much money in the end. But we tried. And we keep looking for more single-level houses in the meantime, until the bank informs us that we're crazy for thinking they'd even consider handing this house to us practically for free. I'll keep you posted.

Alrighty roo, I need my beauty sleep. This undereye area doesn't stay wrinkle free from staying up all night blogging, you know. So! Set your Tivos! Watch your Twitter tomorrow morning! 'Cause you know I'll be all a-twitter with the goings on before we go on camera. TTFN.