Good things have a price

Was it really only 6 weeks ago that Riley’s spasms started, or at least became disturbingly noticeable? It seems like so much longer than that. His medicine was upped to 1000mg (2x/day) early last week, and only had two small episodes since then, so he was able to stay at that dosage this week and we haven’t seen anything since Sunday morning. No obvious jerks, no obvious repetitive twitching, not even the questionable movements in his sleep that was hard to tell if he was dreaming or having spasms. Can’t even begin to explain the joy we feel about that. Hopefully we can get him off this medication as soon as possible, before we get closer to the chances of it affecting his eyes. Of course he has to be weaned off of it (can’t stop cold turkey as that could cause uncontrollable seizures), and we need to know without a doubt that spasms have stopped.

Which means next step, a 24hour admittance to the hospital for a video recorded EEG. Think about what I just said, and how old Riley is. This is not going to be one easy task on any of us. When we found out that his doctor wanted the 24hr EEG, we didn’t know about needing to stay in the hospital for it to be recorded, so we thought he’d have a portable one that he could go home with. Even that would have been having a big wrench thrown into his day. Found out today upon the doctor’s office wanting to schedule it, he needs to be admitted for the recording. One word came to mind when they told me this. Crap. Not only the enormous hassle it is going to be on us being cooped up in a hospital room, Riley stuck to a monitor not being able to spin in circles, being forced to sleep in one position, etc etc etc…and I could probably literally keep saying etc for a very long time with this.

So this is tentatively set up to starton Tuesday June 3^rd, as we already have a doctor’s appointment set up the afternoon of June 4^th, and we could have all the results then. However, we’d prefer to have the procedure done at Children’s over Swedish, so the doctor’s office is seeing what they can do to accommodate, and if we can go to Children’s the date may change, if not, he’ll be at Swedish overnight on the 3^rd…11 days from now.

We need the EEG in order to show how the medication is doing for (aka changing) his brain and affecting his spasms. It will tell us whether he’s still having any, and how severe they are, and when they happen. We have no idea if he has them at night while he sleeps. The hope is after many weeks of medication, the answer is no. That they’ve stopped completely. The doctor also wants a full day’s worth of Riley being hooked up, so he can tell whether the IS is gone completely, still somewhat apparent, or possibly turned into other kinds of seizures. Not having seen any in awhile, certainly hoping that isn’t the case. But we have to make sure before proceeding with what we do in regards to his medication.

Good news so far, most of his remaining test results that we’ve been waiting on have come back…..drum roll….NORMAL. Still waiting on one or two, that we should have by the next appointment, but they don’t seem to be ones that could indicate anything severe, that had been a few possibilities with the tests that came in. The utter relief we both had when his actual doctor called us Sunday afternoon to tell us that can’t begin to explain that one either. But there is the other side to the story of still being in limbo trying to figure out what/if there is something more going on, especially since the first round of tests from his biopsy indicated Type 1 Fiber Disproportion (broad term that can mean 40+ different things). So the next and first step in continuing our journey is the 24hour EEG, and we go from there. Pushing six months later into the beginning of high levels of stress, fear, relief, numbness, and 100 other different feelings we can’t describe…we are to be continued….. 

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.