I've went on and on about how I never expected us to be in this situation...the disappointment, the anger...blah, blah, blah...Yeah, I'm soooo sad that this wasn't my ideal life...BUT, who does get their perfect life? Everyone has obstacles and roadblocks on their paths to the perfect life. I'm starting to learn that maybe this is just a detour and not a complete change in destination. Gosh, I hope so. I pray that one day very soon we will get passed this point on the map and just truck on to Italy. I've always dreamed of Italy, but Holland would be okay too!
So, here we are...in transition (at the airport?), waiting to see where we will be going!
Oh, this stupid IS! Wouldn't it be so much easier if we just knew something??? What route we will be heading??? Will our babies be part of the lucky 15%? No one knows. Isn't that the hardest part? Wondering what the outcome will be...will the delays or damage be permanent, will they recover...partially...fully..at all? What is the perfect drug...what's the perfect dose? As horrible as this may sound, I would rather a different disease -of course, not life threatening, but treatable. At least then I would know what to prepare for and what to do for my baby.
But, that's not in the cards for us. We are dealing with IS, and I'm trying to learn how to deal with it and accept it. I'm trying to stop pretending that it's a dream, or suddenly time will turn back. It's not, and I have to move on and help Austin. If I only knew how. Love, acceptance, hope, advocacy, and patience are about all I know right now.
The best thing right now is that Austin seems so much happier. The happier he is, the easier the journey. ACTH wrecked everything -we had continuing spasms AND misery to accompany them. Poor baby...he still hasn't recovered his good sleeping habits. But, thankfully, it's nothing like it was! He's losing the weight (and unfortunately his appetite), sleeping much better, seems to feel WAY better...everything is a little better in a sense. At least it's not all the spasms AND the ACTH effects anymore. I wish we would have never started that treatment, but I would have always wondered if it would have worked. At least there are no doubts.
Now Zonegran! I know it does have some effect on the spasms. The nurse at our epilepsy clinic didn't seem to think such a tiny amount spilled would make such a difference. She kind of acted like I was overreacting...I've seen this happen at least three times now! It's not a coincidence. EVERY single time that has happened (where he didn't get all of his dose), there has been a dramatic rise in spasms soon to follow. Plus, there's the new cold, his tummy issues...add it all together for an even lower threshold for seizures. Like I said before, I know my baby. They may have treated lots of kids, but if they knew it all, we wouldn't still be dealing with this right now!
We are going BIRTHDAY shopping tomorrow! Yes, I am THE procrastinator! Party is Sunday and I'm shopping on Friday! Classic Holli for you! I'm getting so excited...I've got balloons, banners, crepe paper, you name it...I can't wait to decorate...but, of course, I'm sure I'll wait 'til Sunday morning! :) I'm sure Mom is laughing right about now!