As a fundraising measure, we are selling our own silcone “Livestrong”-style bands. They are a blue-and-white swirl with “Armand’s Hope” printed on them. The “official color” of rare genetic disorders is denim (ie., jeans / genes), so I thought this looked somewhat similar. They are $2 each, and you can contact myself, Lindy, or my parents, or you can come see me at the Centerville Dairy Queen during the afternoons and purchase one there. We have both adult and youth sizes available.
No real Armand-related news this week. He’d been a little under the weather with a rough cold/pink eye/ear infection combo over the last few weeks that has dwindled down to an occassional runny nose. He’s even started to get used to taking medicine.
He did get his second flu shot while at the doctor’s, and didn’t even flinch. Didn’t cry when the nurse took out the needle. No problems. Because he’s a MAN (but not yet 40). Part of his condition does give him a high tolerance for pain, but I’m more proud of him getting over the fear and not freaking out when a needle shows up. I hated even getting fingertip-pricks at the doctor’s office so much I once kicked the nurse. So he’s got me beat there.
He’s also shown a few learning “growing up” moments here that were adorable. First, while my mom was babysitting him one afternoon, he made his way into his bedroom, where he has a 3-drawer-high “dresser” made of clear plastic, on top of which I sometimes keep sweatshirts and clean bath towels. He grabbed a towel and took it into the living room holding it up to my mom, who asked “do you want to take a bath?” (she usually gives him an afternoon bath when watching him at my apartment). He grabs her by the hand and walks her into the bathroom. Thought it was pretty cool.
Second story is related along those lines. The other day he had a doctor’s appointment (2-year checkup; all good, diagnosis aside), after which we came home and had breakfast. He’d been wearing a sweatshirt which I had taken off of him when we got home and had draped over his little leather chair. After breakfast, he played for a bit, grabbed his sweatshirt, and was attempting to put it on, but mostly just got it over his head looking like Little Maroon Riding Hood. He got a little frustrated, and was acting grouchy like he might be tired, so I took the sweatshirt, put it back on his chair, and sat with him on the couch in case he was tired and wanted to nap; he didn’t, and this made him grouchier. Finally he gets down, goes over, grabs his sweatshirt again, and brings it to me; I helped him put it back on, and he points towards my patio door, motions that he wants it open. Turns out he wanted to go for a walk.
Both of these stories highlight something I’ve said about him since he was rolling — he shows how smart he really is by being a problem solver. He can’t talk much yet, a word here and there, but extremely limited and uses them sparingly. So, since communication is an issue, he finds a way to assert himself and let his wants be known. He can’t say “Ju-Ju (my mom’s “grandma” name), can we take a bath?”, so he grabs his towel and takes her by the hand. Problem solved. Before he could even crawl, when he wanted to get to a certain place he rolled; not only that, but he was able to aim and correct himself to roll where he wanted to go, not just randomly rolling around — he had a place in mind and figured out a way to get there.
This brings me to one last thought. When he was first born he grew pretty quickly initially, usually grading out in the top 10th-percentile in weight and height. So Lindy and I would make references that since he was going to be huge, and since I’m a big sports fan, then naturally he’d play in the NBA or NFL. When we found out he was hypotonic and that he may have a serious condition, I said that he was going to be the one to figure out a way to cure it. It’s just what he does. So, get on it, Little Dude.