Almost

Lola was doing awesome yesterday.  She hadn’t seized since 7:30 am and then at 10 minutes before midnight she began to have a cluster.  This was the strongest that I’ve seem them.  They will get worse before they get better.  Usually she gets a little break between each seizure, but last night they were continuous.  They made her little arms shake and while it was dark, I could see the strain in her face.  It broke my heart.  I know that these seizures don’t cause her pain, but it is incredibly hard to watch.  After the cluster she was all about hanging out, laughing and trying to play.  I was talking to a nurse this morning and she said the high energy jitterness is definitely an effect from the...
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Day 4 – May 1st, 2011

This is pretty much what Lola has been doing the past couple of days.  Rob and I aren’t sure if it is her little body trying to get better or if this is what babies really do all day.  I’m sure it has a lot to do with the fact that Lola is probably full for the first time in her life.  Eating has always been a challenge, but now all she does is eat, play, poop and sleep.  I guess that sounds pretty normal for a baby eh?! She had two seizure clusters today.  I always start the day at midnight and she had one at 2:00 am last night.  The other was this morning around 7:30 am.  Usually she’ll have one as she goes to sleep...
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Day 3 – April 30th, 2011

Lola is hungry to say the least.  This seems to be the most profound side effect that we are noticing from the Prelone so far.  She was always on the small side when it came to her weight gain, so this side effect may actually work in her favor.  She seems to be quite happy except for when it is time to take her medicine.  I don’t blame her.  I tasted it today and I would try to spit it out too! She had three seizure clusters, but I’m not even sure if we can count the last one I witnessed this afternoon.  It was like she was making the face, but the actual seizure wasn’t taking place.  I can only describe it as someone opening their mouth...
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Day 2 – April 29th, 2011

Generally, this is how Lola looks when she is on her play mat.  She rarely looks up and it is quite obvious now that it is because she can’t focus on what she is seeing.  Rob and I always wondered about Lola’s sight and even asked our original pediatrician about it.  It was so early on in her life, therefore he did not think it was an issue.   At almost four months old, the book What to Expect – The First Year says that she should be able to focus on something the size of a raisin.  But for Lola, she can’t focus on something that is the size of a plate.  Something in her brain prevents her (most likely the epileptic foci).  Before the diagnosis, we honestly...
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