Wednesday, October 19, 2011


Jacob is seizure-free and off of his anti-seizure medication. Disbelief. We NEVER missed a dose in a year and a half. The last vial of ACTH still resides in the refrigerator and I suppose the last bottle of valproic acid will remain on the counter top. We still have needles, syringes, gauze, and alcohol wipes in our cabinets. Never forget.

I often need to be reminded.

I was meaning to write a post titled "The Truth" because I have been feeling MISERABLE and OVERWHELMED for a few weeks. Why does everything always have to be so difficult? Jacob requires so much care and Matthew requires so much discipline. Ironically, Matthew is more difficult than Jacob. I will not apologize for or feel ashamed about how I have been feeling. My pity-party.

And then I am reminded as I give Jacob his acid-reflux medicine. I glance at the bottle of valproic acid and smile and set it aside.

Tuesday, October 11, 2011


Jacob is "free" years old. For his first day of preschool, I packed his Jacob backpack, given to us by Danielle and Jonathan ( prior to Jacob's surgery last December. All of our proverbial eggs were in that backpack in Boston and now... it is filled with diapers and wipes, a snack, and a drink. Jacob is taking 2 mL of valproic acid twice daily. I am sure that he has been outside of the therapeutic range for a few weeks and we have not seen any seizure activity.

So hard to believe what this three-year-old has experienced. And yet, he is a happy little boy. But Matthew is not. He was sure that when we woke up Monday morning that Jacob would be bigger. We even measured how big Jacob would be in comparison now that he would be turning three. Matthew was certain that Jacob would be a big boy, not a baby anymore. He would even let Jacob ride in the police car with him. But to Matthew's disappointment, Jacob was still a baby to him. I feel sorry for Matthew because he is experiencing what I have chosen to move past.

Jacob is not a typical three-year-old.

Tuesday, October 4, 2011


At 9 months old, he was unable to sit up without support or roll over. His right hand and foot were clenched. I religiously practiced all of the prescribed stretches and exercises and over time, Jacob's core strengthened and he was able to sit up independently. He was able to roll to one side. He was able to bear some weight on his elbows and through his shoulders. Over time, Jacob was able to roll from front to back and back to front. He became mobile within a small circumference around his body. Over time, he figured out how to scoot and expanded into a linear environment where he could do more than just reach, he could explore. Over time, he was able to pull himself up and move from side to side. Over time, he was able to harness the power of his legs and take his first tentative steps. He became fearless. Over time, he replaced sounds and gestures with signs and then with words. After nearly 2.1/2 years, Jacob is aging out of Early Intervention.

I am sentimental. Early Intervention has been with us since the beginning because really, Jacob's life with us before Infantile Spasms is a faint memory. Except for the lobster costume I made him wear for Halloween when he was not even a month old. I do not transition well. I do not say goodbye. If we weren't going to visit Jacob's new school this morning, I would have thrown myself down the front steps screaming "You can't leave me now!". Oh well. Next time:)