Ari took his time waking up again today, getting up just in time to leave for the hospital, and he seemed to be feeling much better. As I had posted late on our facebook, he threw up a couple of times early in the night, around 10:30. At that time we stopped his feeding tube for the night and just let his tummy rest.
At the hospital, our wait was mostly uneventful, but he did have two mild episodes, including one just before he went in for the spinal tap and MRI. Lindy and I made our traditional pilgrimage to Breugger’s Bagels for lunch, then back to the waiting area until Dr. Whitley came out to let us know that everything went well and that he was being moved to Recovery.
Dr. Whitley let us know that his CSF pressure was 18, which is within normal range (< 20), and lower than it was in July, which is a very good thing. This gives us a little more clearance to continue use of the minocycline, while still keeping an eye on things, just in case. A side effect of minocycline, while somewhat rare, is raised CSF pressure — and GM1 patients are susceptible to this rise in pressure. Too much pressure can actually push the brain down into the spinal cord and damage the brain stem.
We have a phone meeting tomorrow to further discuss the results from the labs as well as the MRI that was taken. Dr. Whitley will be out of town on Friday, so we won’t get our normal ‘exit interview’. We also don’t have to meet with Dr. Ziegler, the psychologist with whome we typically have our long dreaded Friday testing — we know Armand has his troubles, but Lindy and I have a hard time hearing it confirmed from other people. It’s not that we want to live in some fantasy land where Armand is the most typical kid on the block (we’d rather that was reality), we just don’t need to hear what we already know and are doing our best to act on.
We are also tentatively scheduled to return January 14th. The discussion was between coming back in three months (January) or six (April-ish?). The last time we had a longer break between visits (Nov 2011 – July 2012), Armand had his largest regression.
As much as Lindy and I have butted heads on many things over the last few years, we actually generally agree on a lot of things regarding Armand’s larger care. We agree that we should keep bringing him as often as we can as long as he is not making a lot of progression. As Dr. Whitley put it, it’s a delicate balance between putting him through all this and the financial strain it takes to keep coming here, and making sure we’re on top of things and catching any major changes in time. If something major happened between now and April and we weren’t on top of it to catch it, I don’t think Lindy or I could forgive ourselves.
On a lighter note, Armand has these two new little faces he makes with his mouth. One is while he’s having a good cry, just before he takes a breath, he sometimes curls his mouth while it’s open, as if he were making a very quiet “oh” sound. I call this “squishy mouth”, and it’s so pathetically adorable that you almost can’t help but laughing a little even though you know you shouldn’t. It’s only funny when you know he’s probably not in any serious pain. His other one is more generally seen when he’s sleeping, he almost gets the same small-mouthed “squishy”, but he keeps his lips shut, looking as if he just ate a lemon. So I call it “lemon face”. “Bitter Beer Face” was already taken.