Mishaberach (healing) List

Link: Mishaberach (healing) List Our good friend Steven is the Rabbi of a synagogue in Los Angeles (he also happened to marry us in Costa Rica even though we aren’t Jewish).  Every Friday night at services, they read the mishaberach (healing) list.  We are grateful that Lola’s name will be read out loud on this list tonight and every Friday night until she is fully healed.  To watch this, please go to www.kehillatisrael.org, go to “sanctuary services” and then “watch services”.  The names are read aloud about fifteen to twenty minutes into the service.  The service begins at 7:30 pm PDT. Thanks Steven and Didi!...
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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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