6 week update!

I cannot believe Baby Owen turns 7 weeks this Thursday! I wish time would slow down a little. He's growing remarkably fast -- weighing in at 11lbs 9oz today at his follow up pediatrician appointment.

Unfortunately, last week we started noticing some new kinds of seizures in Baby O and the doctors were/are concerned. By "new" seizures, I mean that they are different from what we were becoming used to seeing in him. He had taken a "cluster" of seizures Wednesday night of last week - 6 within 1 hour. We had never seen more than one at a time before. We were admitted to Children's Thursday night for testing and another EEG. They were concerned that he was starting to show signs of infantile spasms - a form of seizure that he is at high risk for with his brain injury. They did a 45 minute EEG and saw no evidence of infantile spasms, yet. I say yet because infantile spasms are a form of seizure that do not show up on the EEG right away - it can take a couple weeks for the doctors to be able to see that kind of activity on the machine. Baby Owen did so well with everything, and we are so proud of him. We were discharged on Friday. He will have a follow up 12 hour EEG in the upcoming week which will hopefully give us more insight as to what these new seizures are and what they will bring to the plate.

At first, I was terrified of new seizures. I thought the ones he has had since birth were what we would be dealing with forever. I was very wrong. As a newborn baby, your brain is doing so many things and growing a tremendous amount every day. On top of that, we really don't know the true extent of the damage until we get our next MRI. Of course his seizures were going to change. With everything that is going on up there, how could they not? But, like I said, this is not something we had prepared for initially. After our doctors appointment today, we now know that they will most definitely continue to change and that we could cycle through tons of different medicines before they find a combination that works, and doesn't allow for many "breakthrough" seizures - which is when, when medicated, the person still takes seizures and is "breaking through" their dosage. This is VERY common in infants/children because of weight gain, which the dosages are based off of.

There is still so much unknown. We are working on trying to recognize seizures. We know that he takes them when he gets worked up - he's proved that theory multiple times. Right now, Baby O is lounging beside me on his boppy. A few minutes ago I reached over to touch him and I startled him - he took a seizure. So maybe being startled is a trigger for him -- or maybe not. Maybe he would have had one regardless. There's just no way to know. All I can do is pick him up and snuggle him for as long as he'll let me afterwards which sometimes is until he falls asleep, and sometimes is for 10 seconds.

His Trileptal dosage has been increased and he remains on the Phenobarbital, even though it was to be pulled this week. We were really looking forward to that happening in hopes it would help in his alertness. But it is just a small obstacle on a long, windy road. Remaining on Phenobarbital is not the end of the world.

This Friday he has his initial testing for Early Intervention, so that they can see the areas they need to start working with him on. We're pretty excited about it. We met with our coordinator last week and she really is great. Very knowledgeable and we can tell she is going to be such a big help!

So that's all for now. Tomorrow is his home nurse visit and life goes on, of course. We continue to have faith and stay positive -- he's such a smart, loving, happy baby (who LOVES to kick his socks off -- seriously where did that sock just go?) and we are so lucky to have him in our lives.

xoxo.