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Saturday, December 26, 2009

Happy Finding-Out-We're-Having-Twins Day

On this day three years ago, we found out we were having twins. The twins were all:

When the ultrasound tech innocently informed us of this fact, I was all:

And Chris was all:

And our friends and family were all:

But I was still all:

But it's okay, because now we're all:

This post wouldn't have been possible without my OB-GYN and and a Google image search, so many thanks to them both. ;)

Thursday, December 24, 2009

Festivus Miracle

Lauren really is getting her power wheelchair soon. Everything was approved. It should arrive in January. And it'd better be pink, Josh from Permobil! That's a $33,000 Christmas gift that we were not expecting, so a hearty "thanks!" to the taxpayers of Arizona. Kyle may have to wait until NEXT Christmas to get his, though, as his paperwork fell through a crack. So, taxpayers, keep paying those taxes, please.

We celebrated Christmas Eve tonight with extended family, and then headed home to go to sleep straight away and hope that Santa comes. (He did.)

Saturday, December 19, 2009

Heh? What was that? I don't understand "Approved"?

We got an email today from our physical therapist, who was forwarding an email from the Permobil (wheelchair) sales dude, claiming that Lauren's powerchair has been approved by insurance.

Well, the last I heard, they denied it because she requires an attendant-control unit, and I didn't even appeal that denial. And that was months ago. I had planned to start over with the whole process in January, now that we have plenty of video footage showing how easily they can drive and manipulate the loaner chair that Permobil temporarily gave us.

In any case, our beloved Permobil rep will be here on Monday to take new measurements for Lauren's powerchair. I still don't believe we'll get it. Good, complicated things don't happen to good, normal people. Usually that would require Al Gore to step in and casually suggest-slash-encourage it. Gasp! Maybe that's what happened! I should find out soon and will of course keep you posted...

p.s. No word on Kyle's chair. They're two different kids with two different mounds of paperwork, so we never expect something like this to be approved for them both at the same time.

p.p.s. Anyone know how we can get our minivan converted to transport two powerchairs?

p.p.p.s. Anyone know someone at Bank of America who can fast track our current contract on a pre-foreclosure house? It's a perfect house for wheelchairs, and it's been "pre-foreclosure" for weeks. The final foreclosure date is next Wednesday, which means our contract gets flushed down the toilet if it's not approved by BofA by then, and we are again without a house to buy. I need room for these wheelchairs, yo! Make it happen!

Thursday, December 17, 2009

Big, Fat (Phat?), Fabulous News

Our virtual friends, Bill and Victoria Strong, head a charitable organization named after their daughter called The Gwendolyn Strong Foundation. Gwendolyn was born a couple months after the twins, and has SMA type 1. This one family has been super successful at raising money for the cause of SMA research, and run the Petition To Cure SMA. We found out this week that Gwendolyn's foundation won $25,000 from something called Chase Community Giving. That's Chase, as in the bank, who allowed Facebook users to vote for up to 20 local charities to receive this award, and Gwendolyn's foundation was one of the winners. Bill and Victoria Strong have announced that the sum of this donation will be forwarded to the stem cell research program run by Dr. Hans Kierstad at UC Irvine. Is this awesome or what? Stay tuned for January, when I post again begging for your vote again--that's the huge million dollar final contest!

In other news.....

1. Santa has already wrapped all gifts and pre-assembled all toys destined for our house on Christmas Eve. Does Santa rock, or what?? Also, Santa needs her hair color touched up, so if the colorist around the corner at the North Pole doesn't get an opening soon, the children who spy Santa on Christmas are going to notice a LOT of gray hair. Hmmm... wait a minute, that analogy doesn't work very well, given Santa's known hair color. So let's just say that my hair is almost as gray as Santa's. Must have color done soon lest the world think I'm a homeless person who *used* to have great highlights and mutters to herself things like "I should totally Tweet that".

2. Jenna already has a second loose tooth. Tooth Fairy is currently hunting for empty tin cans to cash in, in order to finance all the tooth losing going on here.

3. Also? Santa needs a pedicure, stat. And slipper socks. Right away. It gets all the way down to, like, 40 degrees at night these days, and Santa's toesies are suffering on every level. Bbrrrr.

Saturday, December 12, 2009

Such fun!

What a week.

Jenna lost her first tooth. And the tooth fairy came.

Then Jenna's cheerleading group at school performed during the live morning video announcements:

And THEN Jenna got her second and final H1N1 immunization at school. Special thanks to Brenlee's mom who coached her through her tears!

And we had a GREAT time at the MDA Christmas party today. Big thanks to my mom for coming with us to enjoy a great time, and provide another set of eyes and arms for the kids. And BIG thanks to the MDA for hosting such a fun time! We missed some of our friends there, including the Harmans and some new SMA families in Phoenix, but were grateful to reconnect with the Wolff's, Nichols', and Felix's.

Monday, December 7, 2009

Taking a Stand

Lauren took her first stand today. Not against nuclear proliferation or the Obama White House or daylight savings time. No, I mean she literally stood for the first time today. We got her stander a few days ago, and she got in it once when her physical therapist, Gayle, taught us how to use it, but she didn't last long in it before melting down. So today was attempt #2, and she lasted a whopping 10 minutes! The goal is to stand for two hours per day, but we have to start small. Her legs have never supported her trunk, ever, in her whole 30 months of life. I'd say we had success, wouldn't you?

Don't doubt that M&M's were her motivator for getting into her stander today, though! She's human, after all.

Thursday, December 3, 2009

Bakey McBakerson

It's the season for baking! I love to bake, though my talent could only ever be classified as "moderate". Lack of talent notwithstanding, here I come bearing my favorite baking tools that I think everyone should have. They make the experience easier and more enjoyable for me:

1. A cookie dough scooper. They can be used to scoop many things, but they distribute the perfect amount of dough for a perfectly sized and perfectly shaped cookie. Mine is a Food Network brand scooper from Kohl's, but any not-extremely-cheap version would do, I'm sure.

2. Easy Read measuring cup set from Pampered Chef. At $23 for the three cup set it's a little pricey, but I haven't seen this style anywhere else. You read the measurements from inside/above the measuring cup, instead of from the outside. I love it. No more bending down to countertop level and squinting one eye to determine if I have the right amount of oil. Supremely convenient.

3. Those silicone baking mats. My mother in law once tried to make me a fan of these and I would have none of it. Turns out, she was right. Whoda thunk? They're great, specifically for baking any kind of cookie. They lay like a thick layer of protection on a cookie shhet. And if you're lucky, you can still find pink silicone mats from October's breast cancer awareness retail extravaganza. Because, you know, everything is better when it's pink. Otherwise, any ol' color will do, I suppose.

And this is an item that I don't actually posess, but I covet. Adorable, yes? Surely my pie crusts would never burn if I wore this? I wish I wish I wish I wish I wish.

Does anyone else have must-have ideas for baking? My husband does all the cooking, so if it's a cooking tool then that's lovely for you chefs, but I'm interested in just the baking-related stuff...

Something to get you into the holiday spirit

I couldn't manage to get little Kyle to do this solo (because he can! And you can almost understand him!), so he had "help" from his big sister.
(as usual, if you're reading this on Facebook, you have to link to the original post in order to view the video)

We're still healthy and happy this flu season--I hope you are, too!

Saturday, November 28, 2009

Turkey Day

The twins got their H1N1 booster shots on Wednesday. Now, all we have left to fully vaccinate is Jenna. Woo hoo!

We cajun fried a turkey for Thanksgiving again this year. And by "we", I mean Chris and our good friend David. And by "a turkey", I mean two turkeys and six chickens. We eat one and freeze the rest for future fantastic meals. Chris is nearly an expert turkey fryer--the only reason I don't call him an out-and-out expert is because he's under 40 years old still and I think that's too young to be an expert at anything. Despite the fact that he's been cajun injecting and frying turkeys longer than Emeril Lagasse.

All in all, it was a great day, and we feel blessed that each of us had a healthy and happy Thanksgiving. Our good friend Alexa Felix, who has SMA type 1 and just turned two years old this month, spent the holiday in the hospital with a respiratory infection, so all our prayers are turned in their direction until Alexa gets better.

Sunday, November 22, 2009

What a Walk!

Today was our first ever Walk N Roll to Cure SMA. What a blast! The weather couldn't have been better. There were SO many people, including local SMA people we hadn't had the chance to meet yet. Plus, my parents and our good friends David and Daria came to show their support, so we were in great company all day. We also met some new SMA families who we look forward to getting to know over the next year.

Team Double Trouble raised an astounding $5,440 for the Walk this year--$400 more than our so-high-we'll-never-achieve-it goal. Amazing! A huge thank you to all our generous donors out there. We appreciate every dollar, and the money goes to a great cause.

Jenna and our friend Madi, who is 6 years old with SMA type 2.

Tuesday, November 17, 2009

Kitchen Sink

An uncharacterstically long period of time has gone by since my last post. The good news is that things around here have been same old, same old, so there's not much newsworthy to share.

Chris and I got our H1N1 vaccines, finally. The kids all still need their booster shot for H1N1, but we're now that much closer to being fully vaccinated. What a relief. And what a great start to cold and flu season--all five of us are as healthy as ever so far, and we're doing our best to have fun and keep busy while staying out of crowds and away from anyone else who is sick.

We have found another house that we hope to buy. It's yet another foreclosure property, so there's no telling how it will all shake out, but so far it's the most ideal home for our needs that we've seen. We stepped through the threshold and noticed that there is no step in the front entry, and then noticed in the kids' bathroom it has a roll-in shower! The whole bathroom is wheelchair accessible, with handles at the toilet and a special shower head/handle. The floor plan is open and spacious, perfect for two little ones in wheelchairs. This house is barely 10 minutes away from our current house, so the location is ideal, too. We should know more in about 6 weeks, but we sure hope that the seller's lender can hold off on finalizing the foreclosure and allow us to buy the house first.

The Arizona Walk N Roll to Cure SMA takes place this Sunday. The weather is supposed to be divine--69 degrees and sunny--and we're super excited because there's a chance we may be able to bring the twins' demo powerchair with us to the walk. I can only imagine the glee on their faces when they get the opportunity to go zooming around the open areas of the park with the other wheelchair kids! They're getting so good at driving the chair. And Jenna doesn't know it yet, but she'll have a new Barbie scooter to ride at the Walk, because she's outgrown her first scooter. We've raised so much money for our team and are so grateful for everyone who has donated. We're about $400 away from our goal of a whopping $5,000 so if you've been meaning to donate but haven't do it now! Thursday is the last day to accept an online donation in order for it to count for our team at the Walk, but donations received after Friday will still be credited to the Arizona Chapter of FSMA and will be put to great use.

But everything this week happens under a cloud of grief for our friend Kory Hofferber. He was 21 years old when he was killed late Saturday night in a car accident near Flagstaff. Our days lately have been spent in sorrow and prayer for him and his family, and any prayers you can spare for Kory's family would be appreciated.

Tuesday, November 3, 2009

Therapy is Working!

We experienced some "shock and awe" today during the twins' physical therapy when Kyle showed us a trick. He doesn't get to sit on the floor very often, because he tips over and mashes his nose into the floor (so sad when that happens), so imagine our surprise when he propped himself up on one arm and then lifted up his knee. He hasn't shown much awareness of his legs or feet at all, so the fact that it occurs to him to move his leg is a pretty amazing thing.

Not to be outdone, Lauren knows how to sit in a Tomato chair with Henry the Octopus and squeal "cheese!"

Tomorrow, we get to hang out in Tempe with the MDA to help meet and greet folks at the Lock-Up there. That will be the last indoor/crowded place we go to for the season, because H1N1 is here for a while and we are so paranoid. The kids all still need their H1N1 boosters later this month, and Chris and I haven't had any H1N1 vaccine at all, so our household is still vulnerable. We know a handful of SMA kids who are recovering from H1N1 right now, so everyone send extra prayers their way.

Friday, October 30, 2009

Monday, October 26, 2009

What a difference a year makes

Today, we're preparing to pack up our (former) dream house and getting ready to move to a need-to-have-a-single-level-in-order-to-accomodate-pediatric-wheelchairs house.

But one year ago today, we found out our sweet twins have Spinal Muscular Atrophy, a genetic and fatal disease.

What a surprising turn of events.

Getting the diagnosis of SMA is a death sentence for about half of the kids who are diagnosed. These are real, live, cooing babies, just like your baby, and your baby, and your baby. My twins are just like any other two year old in most ways--they love to spot airplanes in the sky. They adore The Wiggles and Baby Einstein. They prefer to play with my cell phone and a big box of Kleenex (to rip the tissues out of, of course), but will settle for wooden puzzles and blocks, and they have tea parties (while strapped into chairs on the floor so that they don't fall out). They really love to swing on the swing set outside. They adore their big sister and their Aunt Kimmie and their grandparents. They started out completely normal, and we parents had no clue anything was wrong. But we now that we're incredibly lucky that they are even as strong as they are.

Statistics on SMA are that 50% of SMA babies die before age 2. How both of my twins both fell on this side of that 50% is beyond me. I struggle daily with the question about why my kids are alive and kicking--well, not literally kicking, but they can wiggle their feet--while other kids with the same disease don't make it a year or even a week here on Earth. I'm no different than their parents--just as clueless, just as hopeful, just as surprised to learn that my kid won't grow up to kick a ball or annoy me by leaving the refrigerator door open one day. On a daily basis, I mourn the loss of all the babies I know of who have died since my babies were diagnosed--Logan and Zane and Kayden and about twenty others, at least--and I grieve for their parents. And for the thousands of babies who died of SMA before I knew what SMA was. Each of those children was a gift to the world, and SMA stole them away from all of us. SMA overwhelms me most days, you could say. I never even knew the disease existed until the twins were diagnosed. Now, I wake up several times in the night to turn over my children's bodies because they can't do it on their own, and they could get sores from laying for so long in one position. It's sure not how I pictured raising twins.

We had no history of SMA in our family trees before the twins were diagnosed. But 1 in 30 people are carriers for the gene--regardless of race, ethnicity, or continent. You could be us. And while SMA is a tragic diagnosis, one thing is for sure--when it comes to SMA parents, never have I met such wonderful, down to earth, funny, compassionate, sweet, smart people. I mourn my childrens' diagnosis, but with their diagnosis came the friendships we've made with such wonderful people. I know that sounds cheesy, but it's true. We never would have found these people without the commonality that this dirty, rotten scoundrel SMA has provided.

I've been thinking about it all. Life didn't really play out the way we had planned. But I still say it's important to make plans for your future--Good things don't usually happen to people by accident. We have to be responsible and work hard and save and make good decisions to make that happen. But in this case, despite all our responsibility and working and saving and good decision-making, life threw us something we never expected and sure didn't want. Maybe we'll embrace it as an opportunity, or maybe we'll never accept it. It has challenged our expectations. It has frustrated us, and challenged us to become better people. I'm allowing myself to wallow and indulge in lots of self pity occasionally. I think about presenting my arguments to God and beg Him for an explanation. But sometimes, I just sit back and try to realize that regardless of our thought and planning, or lack thereof, sometimes things happen and it's just not fair and it's not our fault. And then it's time to gather all our energy to make a positive difference and help kick SMA's ass.

I am convinced that SMA is curable. Plenty of experts agree. The NIH recently listed SMA at the top of it's list of priority diseases to receive funding because they feel that the disease is so close to finding a cure. And a cure for SMA could lead to cures for various other neuromuscular diseases, as well.

Families of SMA raises money for research grants to places like UC Irvine, Duke, Johns Hopkins, and Ohio State to find a treatment or a cure for SMA. Help us in our efforts to support FSMA by throwing a few bucks to Team Double Trouble before 11/21/2009.

As an aside...if you haven't met the twins, you really should. Actually, you should meet all three children. They are all completely charming and unique and adorable. I try to represent them here as fully as possible using photos and You Tube, but it's not the same to hear them speak and laugh in person. I hope to meet many of you SMA folk at the next FSMA conference next June in nothern California. But to anyone else, if you haven't met my children then you are missing out. They are angels on Earth, I swear it.

God bless us, everyone! ;)

Sunday, October 25, 2009

Boo at the Zoo

The kids indeed got their H1N1 shots on Saturday! And nobody is sick yet today! We've heard of some folks falling suspiciously ill after getting the H1N1 vaccine--similar phenomenon as with the seasonal flu shot--but my three seem to be a-okay. Just don't tell the babies that they're going to need a second H1N1 vaccine in 28 days. They still cry and point to their band-aids and tell me that the doctor gave them an owie. Tee hee. Chris and I still have to get ours, but we're lower "priority" until the county health department gets more in stock.

We went to Boo At the Zoo today. It was hot! And crowded! But still fun.

Friday, October 23, 2009

Friday Check-in

1. We can't buy the house which I previously mentioned. Due to certain mortgage restrictions on "flipped" houses, we can't purchase this house until after 12/21, so if it's available at that time and we haven't found something better, we'll give it another try. And I won't talk about the Great House Hunt anymore, because I'm tired of jinxing it! Also because it's boring to you.

2. We're going to attempt to get the kids their required H1N1 vaccines tomorrow at a public clinic. Wish us luck!

3. Kyle got a sense of humor. Sort of.

4. Lauren takes the stage, in perfect key. Sort of.

(if you're reading this in Facebook, you'll have to view the original post to see this video, I think)

Saturday, October 17, 2009

Took Jenna on her first ferris wheel tonight

5 hours later, I am *almost* recovered.

She freaking LOVED the ferris wheel. Me? I am afraid of heights. Also? I am particularly afraid of ferris wheels. "Mom, let go of my hand! My hands are tiny! And you're squeezing them too hard!"

Thank heavens the operator didn't leave us at the very tiptop while he let everyone else get off. We were the first off. I'm sure the fact that my eyes were squeezed shut while I chanted during the entire 12,000 hour ride had nothing to do with it.


It was a church carnival. It was fun. If by "fun", you mean 101 degrees F and dusty and expensive.....

Friday, October 16, 2009

Amazon and House Hunting (but not house hunting on Amazon)

I love it when Amazon does their Wish List Sweepstakes. I don't think they did it last year, but they have brought it back this year! Go to Amazon and create your Wish List to be automatically entered to win, among other things, a dream kitchen, Kindle, or a trip to Disney. Everytime you add something to your wish list you are entered into that week's contest again. I frequent Amazon regularly, and I almost missed this contest, and so wanted to share. My whole family has a wish list on Amazon, for anyone desperate to send us gifts...

We're buying a new house! We've been searching for months for a house to meet our unique needs--enough bedrooms for three kids to each have their own, no interior steps, and an open floor plan to better allow for wee ones on power wheelchairs to zoom around. And also? We don't have half a million dollars to spend. We found a home to meet all these needs, with the added bonuses that it's 3 minutes away from my parents' house and also is near an elementary school where another SMA family sends their daughter who is also in a powerchair, so our trail is already blazed at that school. We have the home inspection today, and we close next month if all goes well. I'm trying to convince hubby that we need to be totally moved in by Christmas! That's not impossible, but we have some projects planned for the new house that we need to do before moving in, so we'll see.

We're so psyched! Closing day can't come fast enough!

Thursday, October 8, 2009

We've come a long way, baby!

The boy who previously liked to use the powerchair as a ramming machine is now a civilized, obedient, ball-throwing member of society. Woo hoo!

If you're reading this on Facebook, then the video won't come through (I don't think so, anyway), so go to my blog or to You Tube to view it directly.

That's our physical therapist, Gayle. Also, no update on the status of the insurance appeal for the wheelchair. They're still declined based on the twins' age and perceived ability.

Monday, October 5, 2009

RIP, Stephanie Wike Sammis

I adored and looked up to you as a child. I envied you as an adult. I mourn the loss of your life to cervical cancer this week. RIP, old friend. May God bless your family in this difficult time.

Sunday, October 4, 2009

Happy October

What a fabulous start to October in Phoenix. First and foremost, pink is my favorite color (my middle name is Pinkalicious) (bonus points if you "get" that), and October brings all things pink to every store in America. I hate breast cancer (my Granny is a breast cancer survivor), but I adore pink, so I embrace October for that.

Secondly, this weather has been amazing. I swear, it was one week ago and the high temps were 108 degrees F. Today, I'm not sure it even reached 90 degrees. It has been bliss. The weather has caused us to remember that we have a backyard! And a swing set! And sandbox! What a thrill. The TV has been off more than usual lately, while we frolic in our patch of paradise outside.

Lastly, we sent off all our fundraising letters for the AZ Walk N Roll To Cure SMA over the weekend, and wait patiently for the money to start rolling in. I can't wait to turn in thousands of dollars in donations at the Walk next month!

Mini updates on all of us:
Chris--birthday is approaching next month. Home Depot gift cards would be appropriate gifts.
Me--planning The 2009 Family Christmas Card Photo. With three kids, I gotta start early, people.
Jenna--starts an after school cheerleading "class" this week. It will undoubtedly will be fun for her. No idea when Daisy Scouts will start, but the cookies better show up by February, damnit.
Lauren--my night owl. And an unwelcome one. It's 10pm; Go to sleep, child!
Kyle--my early bird (Byrd). Super early. But at least he's cute.

Kyle helped me with laundry folding today. He's so helpful.

Thursday, October 1, 2009

Estate Planning, Testicle Surgery, and Fundraising--Oh, My!

Chris and I finally finished our business with an estate planner. I never knew that planning for death was so complicated--and yes, that statement sounds ridiculous to me now that we've been through the process. Oh, how naive we once were. Let's just say that if YOU ever plan on leaving me in anything in your will, leave it to the Byrd Family Trust, and if you ever plan on leaving anything to my children, leave it to the Special Needs Trust for Kyle & Lauren (or Jenna, by herself). Because the income and tax ramifications if you don't use that terminology are brutal. We paid thousands of dollars to our beloved estate planning attorney, so please please don't leave any valuable figurines or expensive season tickets to us directly. I implore you. Actually, what we've learned is that the babies aren't allowed to have any income, in order to continue getting their medical services paid for by the government. So their Special Needs Trust was created so that we have someplace to put random gifts--like $20 checks for their birthday, etc--in an account where they can still benefit from gifts but won't be penalized for them. It's all very tricky, but totally legal, don't worry. Our estate planner is located around central Phoenix I'd refer him to any friend.

If you recall from a previous post, Kyle has some undescended testicles which need tending to. As luck would have it, the surgeon does not have any spot open on his calendar until the end of November, so to avoid flu and RSV season, we've planned the procedure for April 2010. It's going to be scary, but I promise to be a brave little soldier through it all.

Lastly, we've registered our family for the Arizona Walk-N-Roll to Cure SMA. All proceeds benefit the Families of SMA (FSMA), who has given millions of dollars in research grants. If you can spare a few bucks, drop them here: It's all tax deductible, and you can count on me pimping this cause until the Walk on 11/22. LET'S CURE SMA ALREADY, PEOPLE! Word.

What we've been doing these days:

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.