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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