I remember when we were in the midst of the infantile spasms, we would dread Allie waking up because we knew what we were about to see. Her spasms always started within a few minutes of her waking up and lasted only a few minutes more. Those minutes seemed to drag on forever and, before we knew it, she was ready for a nap again and the feeling of dread would set in again.
Her first seizure-free day was particularly special because our families had come into town to celebrate her birthday on the following day. I remember a few days later when I was driving my mom to the airport, I commented that Allie had been seizure free for 3 days. She said "that's the best birthday gift you all could ask for." It was.
Some combination of ACTH, Topamax, and Trileptal stopped her seizures. Within a month, she was weaned off ACTH. A few months later, we started the several month wean of Topamax, which had been making her a little groggy and not hungry. She is now on just Trileptal and we don't see any discernible side effects from it.
To celebrate her anniversary and her upcoming birthday, we did two big girl activities this morning.
Her first car trip in her forward-facing seat was to the hair salon for her first haircut. I was not in love with it (and apparently that was very obvious by the look on my face)...
... but it looks OK now that it is dry. The bangs are still a little uneven, but I imagine it is pretty difficult to cut hair on a tiny bouncing head.
Happy anniversary and pre-birthday to our little almost 2 year old!