2 days seizure free and counting

It's going to be a long road for us. Because the minute we stop holding our breaths and watching for a spasm at every turn, I know he'll have another one and it'll break our hearts all over again. Along with that, watching him sleeping peacefully is just as painful, because he has regressed back to newborn status. He's been on the medicine for 4 days now and has lost the few skills he had before being diagnosed with IS. He was delayed to begin with, not holding his head up well, not rolling over, etc but when placed on his tummy he would try to get his head up. When sitting on my lap he could look around for a few minutes before his muscles got tired and his head slumped. Now he has zero muscle tone. He's also decreased the amount he eats at each feeding, and seems to need to eat more frequently as a result. We were up every 1-3 hours last night, just like those first weeks home from the hospital back in October. At each feeding he barely nurses and then falls back asleep and I have to blow on his face and change his diaper to wake him to eat more. I'm scared to do this each time though because the spasms tend to come when he's just waking up. I am happy that the days have been seizure free so far, but nervous about the long term lasting effects of this illness and medication. I know even if he gets months or years behind, he'll have a long time to be able to catch up, but the damage done in the meantime sounds like it will hinder him long term. I know we caught it early and I should be grateful for that. The fact that he isn't having spasms again yet is also a good sign. I should be happy for the way things are right at this moment, but instead I am still focusing on the fact that he should be sitting in his exersaucer in the mornings, laughing at his big brother doing silly things. How do you let that go?

Poor Tobin is having a rough time too. He seems fine throughout the day and evening but every night he's up several times. Crying, calling for us, asking to sleep in our bed. Between the two kids I hardly slept last night. How do you explain to a 3 year old that his little brother isn't normal and might never be? How do you calm him down at midnight enough so that he'll lay back in bed and go to sleep? We had him in his crib until now because we were going to move Oliver into it soon and buy Tobin a twin bed. I think it's time to just do that now even if we're going to keep Oliver in our room. Maybe the "big boy" bed will help him be more comfortable. Just hesitant to spend the money when I know we'll have upcoming dr and therapy bills for Oliver. Tonight we're going to try and take the front of Tobin's crib and turn it into a toddler bed. We'll see if the ability to get up and go to the bathroom on his own will allow him to have more rest during the night. I was so looking forward to the spring, assuming Oliver would start sleeping through the night, in his own room so Jason and I could get more rest. Now it looks like we're right back where we started. Sleep deprivation and sadness do not make a good combination.