paul is in the mass general hospital in massachusett tomight and possible tomorrow he was very sick last night with a high fever of 103.2 and throwing up and he hasnt boweled in 4 days :( we are hoping all goes well they doc said if he poops by tomorrow he is ok to go home but he might be going in for surgury for a fundo aswell soon

I hope Paul goes poo and gets to come home.  Hugs to the little guy.

Brenda

paul came home tonight and  finally pooped he is doing much better today

We used to go to the General and joked about filling Gershie up before we got the g-tube. I hope your neurologist is Dr Liz Dooling. She is the best! I felt so comfortable with her and though we had a primary care MD, I relied on her for just about everything! Please give her my regards, Debby, Gershie's mom.

no paul doesnt see liz dooling he sees dr florian eichler very knowledgeable

• Liz may not be as active as she once was. It sounds like your MD is great, leading the leukodystrophy team. Do you see Esther Israel for GI? I hope that having had Gershie seen there in years past may have paved the way for you in some small way. WHen Gershie was hospitilized, only a very few times, (once when he was leaking CSF after the early gene therapy trial at Yale, and to insert a g-tube and revise ite) he seemed to have been the first Canavan child they had seen as most of the kids were seen at Children's.  I was affiliated with the General, and had worked with Liz before I was even married, so she was someone I trusted and I wanted all of his care at the general.