Uncle Brian shaved his head in solidarity!! Made it MUCH easier for Brian to accept his new hairdo . . . . God Bless you Uncle Brian!!!
Well, today is Day 8 in the PICU, and we hope to move to the floor. We are praying for a private room for many reasons. It is getting more difficult to stay in the hospital. Brian continues to have pain, and difficulty with language and hearing. And some other issues as well that are scary for us. And the less sleep we get, the harder it is to deal with all the different personalities and opinions of the medical staff . . . I have worked in hospitals for over 16 years, and have rounded with NICU teams, so I know the "drill", but it is so enlightening, always so enlightening to be on the other side. To be the parent is never easy. While I knew this surgery would be HUGE, and the recovery long, I don't think I knew how big or how long. . . But as difficult as it gets. . . Today is day 8 . . . and THANK YOU GOD, so far no seizures!!!! Please God, let the seizures be cured. Because even if we have to go through hell and back, if we can take away his seizures and give him back most of his life, that will be something. Of course I want to give him everything he had before. But if that isn't possible, if we can give him a life without seizures, well at least THAT is something quite remarkable. At least that is a miracle . . .
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