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?