Last night I went home, and got everything together to check into the hospital tonight. When I was walking down the stairs I passed the front door where I had carefully placed all of Jude's items I wouldn't forget anything. I stopped and stared at his little blue suitcase, and the scene seemed a bit surreal. I wasn't going on a vacation with him, no we were checking into the hospital again.
I am a little more prepared this time though, and I know the items to bring. A soft blanket for Jude because the hospitals are thin, warm socks, pj's that button up, and shampoo. They provide the pre-mixed formula, and diapers which is nice. For myself, I need a warm blanket, pillow, shampoo, and comfy clothes.
Since being decreased on the pheno Jude seems so much more alert! He is looking around more, turning towards our voices, and is keeping his head up pretty well. So the other night I decided to give him a bath in the sink like you do with all babies at some point. Ugh, I am afraid I got ahead of myself in hopes because his little head hit the sink. It wasn't bad, but still I felt horrible. He is getting much better at sitting on my hip and keeping his head up. At times I forget, or rather allow myself to forget, Jude has issues and just enjoy him being a baby. He will then have a seizure, and it's a grim reminder that he isn't like every other baby. Last night about 9:30 he had a really bad seizure. I was a bit concerned because it lasted so long, and was so violent. Even though we have decreased the pheno the seizures have decreased too, although they are stronger when he has one. So it's the age old question of to medicate or not to medicate. Hopefully, the new medication they pick this weekend will still allow him to be alert.
I could go on and on today because I am a flood of emotions, and questions. So I will stop so I don't ramble for hours. Mike, and Jude are coming to take me to lunch for my Bday, and I am excited about seeing them. I will updated from the hospital when I can.