One of many hard days…

Today was a rough day, and I know I stare down a long road of days that will be similar. It started out OK, at least for me. My husband had the 5am feeding and apparently AJ did not want to go back to sleep. My other daughter and I were woken at 7:30 so I can get her ready for day camp. We don’t let her go often because of finances, however I promised her that she could go for a full day – one day this week – she really wanted to have lunch there. (She just turned 4, so it’s the small things that get her excited).

I got her ready, and sent her and my husband off. I fed AJ, played some classical music, and after her feeding sat her on her mat and we “played”. As well as a newborn can play… after some time passed she was ready to eat again. (It was one heck of a work out.) This is when the seizures started. I must have seen one right after another for a good hour – her feedings and ability to sleep totally hindered. Even way after the cluster, she was having a hard time eating – it is almost like she forgets how to, she makes a high pitch sound and as much that does go in, comes right back out.

Throughout the day she had many seizures though, and seemingly longer as well. They are still under a minute, which is considered mild, but to see so many one right after the other makes me very worried. I feel like I am watching something take away my AJ. On one hand she shows to be a healthy baby girl who plays, makes the most adorable sounds, is alert, curious etc and then I watch as my daughter is knocked unconscious or unaware, I watch it go through her body from her head, to her face down her arm and legs – I watch this thing take pieces of her away.. or at least those are the dark thoughts I have when I watch her have a seizure — all I can do is watch and hold her, tell her I love her and ask that she be alright, all the while feeling helpless.

I am sitting here staring at her now, finally she is asleep. I wonder what tomorrow will be like and what we might learn from the MRI. I hope we learn something that will put us on a path of recovery.

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