From the monthly archives: September 2011

Looking for Answers

By On September 30, 2011 · Leave a Comment · In Baby, Blog, Costa Rica, Infantile Spasms, Motherhood, Parenting, Seizures, West Syndrome

I had a great amount of anxiety leading up to Lola’s appointment with her neurologist today. I think in my gut, I knew that someday he would look for clearer answers as to why Lola has West Syndrome. While most people assume West Syndrome is a condition all in itself, it’s actually not. It is [...]

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Stand Still

By On September 29, 2011 · Leave a Comment · In Baby, Blog, Costa Rica, Infantile Spasms, Milestones, Motherhood, Parenting, Physical Therapy, Seizures, West Syndrome

Lola’s physical therapy appointment today was less than climatic. Moisés (god love him) talked and talked and talked some more. I’m grateful that he spends so much time with us, but damn I just wanted him to start telling me about my girl. My husband could sense my agitation (doesn’t help that aunt fucking flow [...]

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Weekly Edition of Letters to Lola

By On September 29, 2011 · Leave a Comment · In Baby, Blog, Friends, Happiness, Infantile Spasms, Parenting, West Syndrome

Lola, Girl, do you know what an inspiration you are? Do you know how many people read your story everyday and think, “If Lola can do that, why can’t I tackle the hurdles in my life?” What a magical little girl you are, and will grow up to be, what a beautiful journey life is [...]

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The Next Chapter

By On September 28, 2011 · Leave a Comment · In Baby, Blog, Costa Rica, Family, Friends, Infantile Spasms, Motherhood, Parenting, West Syndrome

Hola to all of our family and friends! The last time we wrote a mass email like this was to share the grave news about Lola’s diagnosis. Thankfully this letter is to share a bit of good news. No I’m not pregnant and no we did not win the lottery! Actually, we have made the [...]

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Please Watch This Video

By On September 26, 2011 · Leave a Comment · In Baby, Blog, Infantile Spasms, Parenting, Seizures, West Syndrome

Lola’s prognosis with West Syndrome is good because we caught it so early. Within 10 – 12 days of the seizures (unknown that they were seizures at that time), we had Lola seen by a neurologist and she was put on medication. Because we were diligent parents and because we had doctors that believed us, [...]

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