So, I have to tell you all, since Paisley started to have seizures she has been unusually unhappy and with the start of the ACTH it was getting worse. While I tried my best to stay positive it was very hard to watch my baby be frustrated all day everyday. If she was awake she just whimpered for hours. I prayed that God would at least let me have smiles every once in a while. I was by no means frustrated with Paisley but the constant bad mood was incredibly tough to handle. okay so letting you know how wearing the fussing was on me is just to be able to explain how ecstatic I am about her current state. Last Wednesday she was in a pretty good mood and her mood has just gotten better and better since. God has truly given me hope and peace. Paisley has been laughing, smiling and rolling like crazy!!! It's such a change from what we were experiencing and such a relief to me! I know that we don't know if she's still having hypsarrhythmia but she hasn't had a seizure for over a week AND she's a happy baby. I couldn't be happier!!! I feel so blessed that she is doing so much better right now and I will keep praying that her EEG will be normal in December.
One other note, since babies with infantile spasms almost always experience developmental delays Paisley has been referred to Babies Can't Wait. We'll meet with them today and will hopefully get a rough estimate on how she's doing developmentally.
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