A loaded week..blogworthy for sure!

What a week it has been!

A week of holding my breath, counting seizures, freaking out, second guessing the med weans...

Seizures have been up there. Really up there. But, as obvious as it may seem to everyone outside our household, I'm still not entirely convinced it's the weaning. Wondering, but still not sure.

His alertness, personality, cognition, on the other hand...THAT is MAJOR!!! I believe it was Wednesday when my mom called for her daily lunch hour Austin check in. I had been waiting on that call because this time, I had definite good news! He had been a different child all day. Seizures were waaayyy down (he'd only had about 8 or so when she called -he's usually in the 50ish range by then), and he'd been laughing and engaging like I hadn't seen in months! He's also made progress in some motor skills...he's been crawling over objects but would rarely, if ever, take the initiative to do it on his own. I would have to set him up for it (like put him belly down on the pillows or the edge of his ball pit) before he'd crawl over. This week has been full of chasing him around the house because he's been crawling over his playroom barriers (the blankets and pillows in the doorways)!! It's exhausting...but WONDERFUL!!! We've also seen a new curiosity peak in him recently. Instead of focusing only on walking or his select set of toys, he's been exploring more and more. Getting into everything! Wanting everything! It's been amazing...and tiring. So much that I haven't had much opportunity to update. I've been savoring the good moments...but also still very much aware of the nasty seizures that seem to waltz in and take over. Too often. A big high is typically followed by a major crash, right? That's where I've been. One moment is exhilarating, while the ones that follow zap me and take me back to Seizureland. Personally, I think those clusters and drops are much more difficult to witness after such a promising and joyful moment of peace from it. Anyway....

We had a typical EEG and epi visit in Houston yesterday. What did I say earlier about worrying about the EEGs? I'm always worried and nervous. We weren't expecting any improvement because of the ongoing infantile spasm and atonic seizures. They are the same if not worse than they were during his last one.

So...when the epi came in and proceeded to tell us that the hypsarrythmia is gone...I was obviously surprised. That's right. It's gone! The EEG altogether has improved quite a bit. There is much more organization and improved sleep spindles as well. Many of you may know exactly what I mean when I say all that...many may not. This was a spontaneous post, so I will get into specifics later on...when I can collect my thoughts better.

I just wanted to update everyone on this past week. It's definitely a good thing that the EEG has improved. What this means for now on...still unclear. Remember, we are still dealing with atonic seizures as well -a totally different type from the infantile spasm seizures. But, still a positive. Actually, the most positive piece of news we've received since he was diagnosed.

There was also some alarming news we received so that puts a halt on the parade for now. If you were wondering why I'm not as excited as I should be. I am happy though. Very. ANY improvement on the EEG is a step forward. But, I'll get into the rest tomorrow maybe.

As for now. Austin is alerting me that he is awake...and ready to get up!!! We're heading off to visit Grammer!!