Whoops, looks like I’m a bit late in my update. We’ve seen some changes in Victor that make us both pleased and quite concerned. As we’re continuing his drug wean he’s had the return of some of his longer seizures (Complex Partials). In fact, over Mom’s Day he had 4 of them in one day, lasting shy of 3 minutes/each. This has certainly worried us but the doctors feel it is not related to the Vigabitrin wean.
As a drug is weaned, it is not uncommon for some breakthrough seizures to occur. Typically a few may happen and then level off and (hopefully) stop altogether. It is our hope that the increase of seizures we’ve seen is due to this and they WILL eventually decrease. As of today, Victor’s averaging about 20+/day. Some are very quick and look similar to the Spasms he once had, so we are doubly worried: while it is the Vigabitrin that helped to stop the Spasms in the first place. As you can see, we are in a constant Catch 22 with many of the methods we try to help Victor. Undoubtedly, this makes it hard for us to focus on the positive.
However, as he comes off of the Vigab, he's been more alert and staying awake in longer intervals. This has helped his sleep habits, which are far from ideal as he continues to wake up in the middle of the night (1-2 hours at a time) on most nights. However, he has had some evenings where he’s slept 7-10 hours but those nights are rare and show no sign of rhyme or reason. We’ve tried and are trying everything to get him to sleep completely through the night but this kid sure has a mind of his own (hmmm, wonder where that come from?).
In the physical department, he’s showing more strength. In the mornings, we've found him scooched diagonal in his
crib--this is encouraging for us as it shows us that he's gaining the ability to move. He’s also been pushing with his back and moving his legs independently. While on his belly, I’ve seen him push up slightly a few times and lift his head for very brief moments. In his Little Room, he’s been going to town! With a mirror in place, some chimes and a very bright ball and slinky he’s got lots to explore with and often moves his head in either direction, all the while making lots of happy sounds.
We continue to take him to Swim class twice/week and will for the next 2 years, until it’s time to lottery again into the next class. Being in the water has been very good for him, both socially and feeling his body move in various ways. Next week, we’ll start him on Speech therapy to help with improve his oral motor skills. Victor’s swallow is definitely obvious now, as you can hear it and he clears his throat very well. It is my belief that he will be able to taste foods (yet bland) very soon.
At current, Victor is weighing in at shy of 22 pounds and is still 31 inches long. He’s still got 6 teeth (which are big) and those feet are getting bigger too, as he’s jumped to the 12-18mos size. Victor turns one on June 1st. It is hard to believe that a year has already passed! He’s a strong and stubborn little guy—which we’re happy about, as I think that’s what’s making him survive all of this crap!
Thanks again for your thoughtful prayers and support, it does help!
Happy Memorial Day weekend!
Next Update: June 11th
