New motivation...

I have to admit, I've been avoiding posting for the past few days...mostly because I've been waiting for good news to share instead of this depressing junk that has consumed us lately. While I don't have the best to share, it's getting a little better.

I've noticed a very slight decrease in seizures/spasms. He seems to be adjusting a little more to the increased Zonegran dose too (we're up to 300mg/day now). At first, I was beside myself because I couldn't see what good it could do since all he wanted to do was sleep. He would get up, take meds, practice standing for a while, and was ready to collapse. This cycle would continue throughout the day. He's still sleeping more than normal, but his alertness is improving slowly.

Another reason I've been sort of MIA lately is because of this new book I've been reading. I've just been glued to this thing. Although it doesn't tackle Infantile Spasms so much, it does have tons of info that I've been trying to understand for months. It actually makes sense. I was telling a fellow IS parent about it earlier in an email. It points out so much that I need to check into. I'm learning more from this than all the research I've done over the past five months combined. I'm looking into every possible avenue for an underlying cause...whether that means finding it or ruling it out. Remember, we want to rule them ALL out. We DON'T want to find a devastating metabolic disease, brain abnormality, etc. BUT, it is so crucial that we know one way or another. I'm also realizing that every little detail matters. The right arm (not sure if I got into that on here -I will soon), the direction he rolls his eyes during a seizure...

These doctors MAY spend thirty minutes observing/evaluating these kiddos every few months. In that time they may or may not have a seizure. I'm with Austin 24/7, so I KNOW when something is off, or when something new is occurring. That's all I do, all day, everyday...is watch. Watching for a sign of either something new, or something that could point to something else. When you don't have ANY answers about ANYTHING, all you can do is LOOK LOOK LOOK. I'm looking for anything and everything that the docs may not have the opportunity to see for themselves...that could be relevant and crucial. Just as I told Danielle, my old preconceived notion that these doctors know it all, is gone...out the window. Duh, I know they know more than me...BUT, they DO NOT know my baby more than me! I know every move he makes, they certainly don't!

This book has inspired me to take control of the situation. To explore options, research, observe...I did not realize how important that could be. There is SO much more to this disorder than I thought...thanks to our horrible previous neurologist that didn't have a clue!

I will definitely try to update more often. I've just been so consumed with all this new info...still trying to figure out where to start!

I still have so much to say, but running short on time...Austin's up from his nap and we're going to get ready to head to NANA's!!! I'll be checking back soon...