Wednesday, March 16, 2011

VERY Cautiously Optomistic

Well we are finally back home from the hospital, at least for now. Ethan is doing ok to good currently. He had 2 pretty bad days when we first got home and I needed to give him Diastat both days. Yesterday he had 14 seizures in 45 minutes, NOT a good way to start the day! But then today happened. He woke up and I waited.... He had one seizure shortly after waking and I figured the flood gates had opened then nothing. He had an appointment with his pediatrician today to get her all caught up and once again he had a seizure while we were there. I was telling her that he would start having a bunch and they probably wouldn't stop but once again, nothing (kids like to make liars of their parents in front of the doctor anyway!). He's had a couple little quirks that might have been a seizure, but nothing more, no clustering at all today! (As I'm writing this he just had a seizure falling asleep.) Ok so 3, maybe 4 for the day. Considering he's been having 30+ a day for some time now this is amazing!!! Most people wouldn't be elated if their child had 4 seizures in a day but I couldn't be happier! I have this tiny glimmer of hope that this new medicine is making a difference. But I'm scared. This isn't the first time a new or changed up medicine has stopped or nearly stopped his seizures, and every time they come back worse than before. But I spoke with another mama with a son with Doose who has been through more than twice the number of drugs Ethan has been through and she said this one actually made a difference for her son. Maybe it's actually working????

All set to leave the hospital!

While his seizures are decreasing for the time being, the side effects are in full force. He walks around shaking all day. It's horrible to see him like that, and I can't imagine how he feels. He gets frustrated with it sometimes, which is just too sad. This morning I was walking him down the stairs (imagine walking a toddler down the stairs, we're that careful, if not more) and he was stumbling every step and he looked at me and said I can't walk. It's so sad. He just wants to be a regular little boy and he's debilitated not only by the seizures, but what we're doing to "treat" them. He's so tired all the time. He sleeps all night (he's been a bit restless lately), gets up in the morning, eats breakfast then I beg him for 15 minutes to just swallow his pills while he throws up a few times, and takes a nap. Wakes up a few hours later to take more pills, eat lunch, play for 15 minutes then take another nap. Then he wakes up plays for a few more minutes, eats dinner, spends another 15 minutes throwing up while we beg him to take his pills and goes back to sleep. He's so tired all the time. He literally passes out anywhere. He'll lay down and start fake snoring and be out 5 minutes later. I have a 13 month old that doesn't sleep this much.
Apparently this was a good napping place.
We're still waiting on the metabolic labs and haven't heard any new news. Every time we talk to the doctors though it's like they're just trying to gimp us along until we can start the diet. They always say we just want to try this until we can start. Now what the heck are we going to do if he's one of the 1 in 3 that this diet doesn't work for? What do we have left to try??? Ahhhh! I can't even think about that right now. It just has to work. We need our Ethan back. He's the shell of the little boy he used to be:(

Just because I'm proud of myself I wanted to show off the skirt I made Taylor! This yarn came to my house as a thrift store sweater. I unraveled it and Ethan helped me dye it, then I crocheted it into a skirt! Mike said it was too short, so I've made it a bit longer. I'm not the crocheter in my family so I was proud of myself:) 


And just because they're the cutest kids ever!!!

1 comment:

  1. I was thinking of you today and wondering how Ethan is doing. Fingers crossed that this new med will help him and that the side effects will subside. And the skirt...too cute! Your kids are adorable!! :)