One thing that is also a goal is helping Philip sleep. Managing the chorea has helped with that but his current sleep aid is not working anymore to help him get to sleep so we are also working to find a new one. Monday into Tuesday he slept 3 hours out of 28 and those 3 hours were in the daytime. That is not a workable cycle for his body so we have to help him. We added the new sedative last night and he slept 5 hours at night with the help of a sedative plus a 1 hour nap midmorning without getting a sedative. That is a little better so we feel we can work with that through time to help him develop a good sleep pattern back. He definitely needs to get more than 5 hours but we feel with all the changes that we're making that the amount of hours will continute to increase. Insomnia is a problem in NCL so eventually it will be very hard to maintain a good sleep cycle but we will still try for his benefit and mine. If he sleeps at night that means I can as well. We also want to have an option to calm him besides his nightly sleep aid so we will talk to the doctor about that today as well.
We have definitely had "crossroads" hospital visits before where we will not return to our "normal" when we return home and this is one of them. So, we forge ahead from here to develop the new normal over the next weeks and months. In all this, Ben and I have that peace that passes understanding. I know for myself, I felt it disctincly when we were told this was definitely not seizures and probably chronic. From that point, the Lord's grace in a sense said to my heart, "This is the next step in the journey" and from that point I have been okay to learn how to manage it and even to watch Philip with his continual movements is not distressing. I tell myself this all the time, "Remember, God's grace is for Philip, too!" For all I know, the Lord is allowing Philip to think he is at an amusement park or chilling on the beach. It's not beyond the scope of our God. I've known His grace to allow me not to feel things I should've by all means been feeling in multiple situtaions so I know He can do the same for Philip.
We'll try to let you know if we will be going home or staying after we talk to the doctor.
Thank you, thank you for praying for us. We pray that God is blessing you for those efforts. Even though it may seem you are doing little to help us, we know that prayer makes a difference.