Sunday, September 5, 2010
Home is where the heart is. I’m not sure who coined that phrase, but it couldn’t be more true. This week was all about being home with Grace. With all the bad news and challenges we’ve had since her diagnosis, being at home with her has been the lone joy. Holly and I have been very happy to be home with her and seeing her in a more comfortable environment.
Our first week home has been challenging on many fronts. Holly and I have been resuming business operations and our respective responsibilities. We’ve been adjusting to the Hospice services and learning how to navigate through that process. And we’re also seeing Gracie’s seizures manifest physically.
A day after we came home we finally saw our first seizure. It was very disturbing to us to see her this way. But it also helped us recognize what they look like. Even though she was diagnosed with EMEE (Early Myoclonic Epileptic Encephalopathy) nearly two weeks ago, we’re just now starting to see the physical effects of the seizures. I believe her diagnosis was identified even before it manifested to where it is now. Although I doubt the early detection has served any useful purpose, it has given us more of an insight to what’s going on with her.
During the first seizure on Tuesday, her face became flush and her head was tilted back while her eyes were wide-open. Her right arm was raised and her left leg was straightened out as both jerked in a slight rhythmic pattern. This rhythmic pattern was what really keyed us into the fact she was having a seizure. She made very little noise during the brief (10-15 seconds) seizure. Afterwards, her body relaxed and her normal coloring returned. Although it was alarming to us, she seems to be OK afterwards.
The following day she had another one and by Thursday we saw four. What’s concerning to us is she’s generally quiet during the seizures so we’re not sure if we’re missing some too. Even with a video baby monitor and close proximity we could be missing some of them. The one correlation we have made is they appear to only be happening while she’s awake. When she’s asleep she’s in a very deep state with very little movement or activity.
Obviously we contacted the neurologist who doubled her seizure medication (Keppra). Unfortunately, as previously discussed, seizure meds are fairly ineffective against this type of seizure disorder. So we haven’t seen it get any better. Since Thursday we’re seeing about 2-3 a day. As much as it pains us to see her having one, it’s comforting to see her come out of it and not appear to be in any pain or discomfort. We don’t know if she’s more out of it then normal during these times. She just looks at peace.
I think it probably affects Holly and I more then anything. It’s just so unnatural to see such a beautiful young baby having a seizure. It’s like seeing nature going awry. She’s so innocent and pure it pains us to see her going through this. Not to mention the realization that this is probably just the beginning. I wish there was more we could do, but sadly there isn’t. All we can do is continue to be there for her, take care of her and more importantly shower her with love, kisses and hugs. We love our little baby so much.
Posted by Brien Cook at 9:55 AM