Lots to get to, so let’s get started, shall we?
We head back to Minnesota this Saturday, November 12th, and will be there until the following Saturday. Armand will have a series of follow-up tests performed, to check on his progress and compare with the tests he took back in August. So, once again he’ll be under while they perform a MRI, a spinal tap, blood and urine tests, a meeting with the neurologist, and a neuropsychology test. Additionally, because of his newly crossing eyes, we will be meeting with an opthomologist.
Right here is where I would like to thank everyone for the donations so far. I don’t make a lot of money (and Lindy isn’t exactly independently wealthy either), and the help we have received has made this trip possible.
We also received word that Armand will be starting the 3rd drug in his cocktail while we are there in town. For some reason, again, I can’t think of the name of it, but it is a commonly prescribed drug. It can have some side effects, including swelling of the brain, so we have a lot to be watchful for, however, this is not a common side effect.
Also, his miglustat / Zavesca has been increased slightly in dosage. Originally, we gave him 1 tsp per day, but that didn’t agree with his tummy. We cut that dose in half, then started giving him half in the morning and half at night with no issues. Now he gets half at each meal (for a total of 1.5 tsp), which cause some minor intestinal issues as his body adjusted. He seems to be okay now, however. I have (when I have him, at least) further limited his carb intake this week, which works out well for me — since I was the one who went Trick or Treating with him, and since he can’t have much of his candy, well… someone has to eat it before it goes bad, right? For those in the neighborhood that we scavenged, please stick to full-size Snickers and Twix next year, and bless you to whomever handed out Blow-Pops and/or Reese Pieces.
Also, if anyone happens to find a blue hearing aid mold in or near the parking lot outside of the Wal-Mart in Kettering, please let me know.
Lastly, we think we might have a new / old word. About this time last year, Armand said about 5 – 6 words: “light”, “hi” (in person), “hello” (more like “hurro” on the phone), “yeah!”, “that”, and “what”. I’m still torn as to whether or not to admit he said “mom”, since he’d say it to anyone with no discrimination and it seemed like random babble. Or maybe just sour grapes.
Anyway, all of those words disappeared into just noises and grunts, which we long attributed to his hypotonia and GM1. HOWEVA, on Friday we were leaving to run some errands and he was quite excited to say the least: paci in view, sippy cup in hand, getting carried by Dad out into a nice day to do whatever it is ShortRound and Dad are gonna do. So he started making noises, until he popped off with a “Yeah!”. Followed by another.
I asked him “Buddy, did you just say ‘yeah!’?”
“Yay, Buddy! You said ‘yeah!'”
He giggled, but said no more to me that day. However, before I said anything to her, Lindy said she thought she heard him say it over the weekend as well. So good signs in that department!
I think that’s all we have for now. The final drawing in the DQ raffle will be this weekend, for one of two free oil changes. As always we also have bracelets for sale. I’m working on a few ideas for fundraising coming up, so stay tuned as well. Just trying to be creative and innovative, as well as cautiously hopeful.
(UPDATE) Forgot to mention this in my original post, but the tremors that Armand was developing a few months ago have subsided since we started him on the miglustat, which is another great development.