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With Josh's last seizure cluster three weeks ago, we called the on call neurologist and he upped his new medication to the maximum amount for his weight. He then told us we needed to make a follow up appointment in the clinic ASAP. However, during his stay in the hospital he was so sedated and couldn't stand to be weighed so instead of weighing him they just asked me how much he weighed. I guesstimated and I unfortunately guessed wrong. I didn't know how far off I was (10 pounds) until I weighed Josh after his last seizure cluster. That meant they dosed his medication off the wrong weight which is a big deal. Well we had a follow up appointment scheduled for the week that my pregnancy went downhill so of course we didn't make the appointment. We ended up scheduling it for last week instead. So far, as far as we know, Josh has stayed seizure free, but you just never know for sure since he has the majority of them during sleep. Anyway, we have to back off his new medication a little since he doesn't weigh as much as I thought he did. I am just hoping it doesn't set him off with seizures again. We are backing it off very slowly over the space of 4 weeks so hopefully nothing will happen. As for this new medication, we are dealing with quite a few side effects, but we are hoping they will fade in time. He is very emotional. They warned us this is a common side effect. His P.A. even said, "He may grow horns and a tail." which sometimes explains him right now. However, they don't want to mess with any of his meds for a couple months just to get him all the way settled. It may be a long couple months...

As for Noah he is doing well. They are trying to get him eating from a bottle, but he still continues to be too tired to do much. They keep telling us it just takes time for him to recover from being premature so we are learning patience right now. At least this gives me time to fully recover before bringing a newborn home. Here is a picture of him in his cute clothes from today: