About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Thursday, November 19, 2015

Follow-up with our epileptologist

We had another meeting with Dr. Jarrar today. I love how she remembers us even though we haven't seen her in six months. She told us she just saw Dr. Frost a couple months ago and he asked about us. That made me smile! The grumpy old man really did like us! We miss him and all our friends on the fourth floor. We heard Ms. Tina is back too! I think we need to request a visit to go up there and see everyone! They really did become family.
Dr. Jarrar didn't have a lot to say. She was excited about our year milestone but did realize as well that we are approaching our previous maximum seizure free days. We were hoping to maybe start weaning down some of the medications, but Dr. Jarrar wanted to wait another six months before we do anything. I'm a little disappointed, but a little relieved as well. It is always such a scary thing to change anything that is going well, but I want to reduce the side effects as much as possible. I want to meet Jayen for Jayen and not the one complicated by side effects. For now we will continue to cross our fingers, toes, eyes, legs, arms, ankles, knees, and anything else that will give us more seizure free days.

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