Up and Up and Up...and halt!

Each week I have a phone call with Riley’s neurologist’s office on Tuesdays to give his nurse and his doctor an update on how he’s done for the past week on his medicine and what spasms have been like. The week before last, he was still having small episodes on a daily basis while on 500mg. Last Tuesday was the first day with no spasms, but of course the day wasn’t over when I spoke with his dr, so I couldn’t officially say that yet. Since we spoke late in the day it wasn’t until last Wednesday morning I got a call first thing, and his doctor had decided that he wanted Riley to go up to 750mg. Once again the first few days of moving up in dosage were full of sleepiness, the rolling in and out of “the fog”, and fighting to find some sort of routine.

He started to come out of it and adjust by the weekend, and we decided to finally go purchase him his new car seat. He had gotten to the point in his infant car seat that his little feet where starting to hang over the edge. Big boy! His new lazy boy is purchased and installed in my car and he seems to be OK with it. Might take a little while to get fully use to as he has much more room to kick and move his arms around, which he’s not use to.

When speaking with his doctor’s office yesterday, I had good news to tell them. Out of the previous seven days, he only had spasms on TWO days (Thursday and Saturday). He hasn’t had any since Saturday night! We can’t expect the spasms to stop dead cold, so even though it wasn’t a perfect week with no spasms, he’s showing great signs of them dying off. His doctor decided it was enough to not go up in dosage again, and to keep him at 750mg for this next week. We will of course reassess next Tuesday, but so far so good!

And not having to go up in dosage again, means he doesn’t have to re-adjust to more medicine and fight off the lethargic-ness and “the fog” for a few days until he can shake it off. Which means, boy have we had some amazing personality and attitude that past few days, especially today. All the sudden he’s realized he can move his arms higher than around his waist. He’s swinging them to get momentum, but they are all over the place! My jaw is actually a little sore from being hit in the face multiple times today. He thinks it’s great though, and it is. We had his PT session today, and she was just absolutely thrilled at his new movements and how “there” he seems to be compared to the past month. He has been a very very happy and smiley boy today just having a grand old time, and it couldn’t make us any happier JBaby steps are turning into progress, let’s keep it swinging forward, just like his arms.