An overdue update
Posted at 9:30pm PT
Sorry, I tried to update from Sean’s room this morning and the computer ate it again. So much has happened this weekend I don’t know where to start. Sean is very alert. He tries to talk a lot but because of the vent he has no sound so we can really only understand yes and no. Some highlight moments were when his nurse asked for a thumbs up and he did it. He has been able to control his pain meds by telling his nurses when he is in pain. I showed him 
a picture of him and Kiersten (the pic on this page) and he smiled. He has continued to do great on his vent wean. On and on, he keeps finding ways to show us that he is very much with us.
Yesterday morning he was in a pretty mellow mood and we had a nice time being together. Today he has been very quiet. We think that he is just sick and tired of people being in his face and he doesn’t feel like talking or even interacting.
This morning I talked to [the neurosurgeon] and he said that Sean is moving on to other docs, that he doesn’t need a neurosurgeon anymore. So I thanked him and that felt very weird. It was great to know that Sean doesn’t need him anymore but a mere thank you didn’t seem like enough. How do you possibly thank people for saving your child’s life.
As for us we are trying to do some "normal life" things and continue to be at the hospital. We were starting to get very overwhelmed when it occurred to us that people really aren’t built to spend a month in a NTSICU. Not only are we coping with what is happening to Sean but we are constantly surrounded by other peoples tragedies. It is impossible to close your eyes to what is happening in there and we have become friends with some of the other families and we hurt with them. It is not a bad thing. I truly believe that God made us to do life together and share not only our joys but our trials. He made us to not only reach out to those we know and love but to strangers.
We are in the midst of a life lesson that we will carry through our lives and will make us grow in our understanding and compassion for others. But, there comes a breaking point, when you realize that if you don’t take a time out then you wont be any good to anyone even yourself. So here we are at yet another transition point and again we see that God is working out the details.
Sean doesn’t need or necessarily want all of us in there at one time. So, we are taking turns again which makes it possible for us to do other things. Today Kiersten and I went grocery shopping for the first time in a month. It may not sound like much but believe me it was.
This is what happens when I don’t update enough, I ramble.
What to pray for? Sean has had digestion problems for a couple of days. He has vomited three times and hasn’t been getting his food through his feeding tube for two days. Please pray that his digestion problems are resolved. Please pray about his vent weaning. Also he is getting nearer to transitioning to rehab. There are many unknowns concerning where he will go. We are thinking that he will probably go to Kentfield in Marin county or to Santa Clara Valley medical. Please pray for Sean as he is becoming more aware and overwhelmed and for us as we are having to find renewed strength to move forward. I would also appreciate prayer for all of our extended family and close friends that know and love Sean so much and are hurting in this time.
To all of them and to all of you, thank you isn’t enough. Please know that although we don’t call we love you and greatly appreciate you. You are all gifts from God.
Goodnight beautiful people, remember always that God is great and He is present.
Love,
Terri, Vince, Sean, Kiersten, Kyle & Kayla