Sweet Baby Girl

My darling daughter had another seizure last night, well this morning. I know that some of you who read this have watched your children seize more than you'd like, once is more than any of us need. I watched Ella seize for about 2 days straight within a day of being born. I remember the helpless feeling that there was nothing that I could do, and it seemed there was nothing that the doctors could do either...absolute frustration and helplessness. After 3 days of seizing she had tremors, I think they lasted another few days...and they were just as bad because it just felt like she was still so sick, she was. As soon as they got the seizures and tremors under control in the NICU she didn't have another episode...until almost 3 years later. I thought we were lucky. I read so many peoples stories about their kids and was so grateful not to have seizures. I felt like we had so many obstacles and was glad not to have that. And then they happened. No matter what we have done over the last 15 months, they keep coming. At first directly related to fevers and infections, but now, no trigger. We can't associate it with anything. The last 3 have been within 6 weeks, exactly 2 weeks apart each. I feel as though we are holding our breath now, just waiting for another one. If you have never seen your own child seize, I pray you never do. It's horrible. The last 6 seizures we have called 911 and gone to the hospital, for this one we stayed home. Joe heard her at 2:45am and jumped, knowing exactly what it was...we can hear them through the baby monitor. We administered the medication and waited. The full 2 minutes we watched her seize felt like 2 hours. Sitting there, doing nothing was horrible. As soon as the seizure was over she was back...back to being Ella. She made her normal noises and eye contact and even a popping noise that she does with her mouth. She smiled and was our little girl. We stared at her for about 15 minutes, waiting to see what would happen and then exhaled as the seizure didn't return. We picked her up, put her in our bed between the two of us and then slept off and on looking at her all night. She didn't move, that's what Valium will do to you, and she slept with her hand on her daddy, her hero. She's still a little sluggish today, but mostly back to herself. I don't know how much more of this I can take...it's emotionally and physically exhausting, but for now, our family is home and healthy.

...oh, and Will busted his lip at church today...crazy few hours of life.

Here is a picture of the kids from this evening:

The Human Brain

I have realized that God is pretty amazing because no one has really figured out the human brain. It's like God's little secret He's keeping all to himself, but boy do I have questions for Him when I meet Him face to face...hopefully it won't really matter by that point.

Ella has a seizure disorder. Many will call it "epilepsy" but all that means is "seizure disorder" so we can really call it either way. I'll try to explain a little bit about what we found out from the neurologist today. I have to admit, I don't really understand all of what he said and as Joe and I drove away we started talking and realized that we have a ton more questions, but for now, these are the answers we received.

• Ella's seizures are a cause of the brain damage done at birth and could have surfaced more recently because of new brain growth (the good kind) and an interaction with the present scar tissue and open pathways.
• They have always occurred when Ella is sleeping and I learned (Joe already knew) that your brain is more active when it's asleep than when it's awake, so the constant movement on her raw pathways in her brain could trigger a seizure.
• Why doesn't the medicine stop the seizures? It might just be lowering the number that she has. They can't prove that Ella would have more, or less, seizures off the meds, but we aren't willing to risk it either. The thought is that off the medication the seizures could be more frequent and more intense, so for now we just monitor the levels of medication and how her body processes that medication.
• Exhaustion may play a role in Ella's seizure activity. We can't prove how long the exhaustion has to occur to lower her threshold for seizures, but we are going to try and be more proactive to prevent exhaustion, but not to completely decrease her involvement level in life...that's a rough balance for us because there are no clear cut lines on what level wears her out and causes her brain to react. This will have to be a prayer request that Joe and I will agree and feel a peace about the activities we elect for Ella to be involved in...both for her benefit and for her therapy.

That's all I can remember, but I'll have to see if I missed anything from Joe.