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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Three so far

Thus far three seizure clusters today, but still better than the days before.  We appreciate all of your thoughts, love and support.  It makes the craziness of this week a little bit more bearable.   Also, for those who are confused as to how they didn’t know… this has all happened since Monday.  Yes, that’s right… Monday, April 25th.  We began to see the seizures about 10 – 12 days ago, but didn’t actually know they were seizures at that time.  We thought she was as healthy as any other baby.  But as the seizures continued we began to think that there was indeed something wrong.  So, no none of you have missed this.  It is just that new.  She was officially diagnosed yesterday, April 28th.  It is...
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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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Day 1 – April 28th, 2011

We have no picture from yesterday.  I brought my camera to all of the appointments, but it seemed insignificant to take photos of my kid with machines hooked up to her.  The mental image I have is one that will never go away.   Yesterday Lola began her Prelone treatment.  Because it was so late in the day, she only received 7 ml of the medication.  Her treatment program will be 14 days of 14 ml a day.  On the 15th day we will gradually reduce the amount she ingests. Lola was so exhausted from the day, she fell asleep at 5:30 pm.  I don’t know if she had any seizures last night because she is the one that gets me up when she is ready to eat.  Generally...
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Life has changed

In the past week, our life has changed drastically which is why we have refrained from blogging.  At one point, I was ready to give up on the blog altogether.  But now I realize that it is a way for our family and friends to see how Lola is doing and it will also become a platform to raise awareness about “Infantile Spasms” or “West Syndrome”.  Each day I will post a picture of Lola, how she is progressing or not progressing and what side effects we are seeing from the medication she is on.  Of course, we will continue to spotlight the little joys that Lola brings us as well.  🙂 This is what we wrote to our family and friends. “We have some important news to...
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