to Sharon W
- Hi Sharon, I think I know you from the mitoangel list. Am I correct? We took our Taylor to UCSD. The room you stay in with your child is fairly large and they will give you a cot to sleep on. There is a bathroom in the room if I remember correctly and I took my showers there. They do like you to be up and ready fairly early in the morning. My husband went also but only one parent could stay in the room. If you contact Jean Stewart, there is a bannister house for you to stay at fairly cheap. The room we had at the hospital looked like it was meant as a double room but we were the only ones in there. You get one on one nursing care. It is nice. We saw Dr. Barshop most of the time and then Dr. Haas evaluated also. Dr. Barshop was great. The hardest part about it were the fructose and glucose challenges because they have to drink this stuff and then wait so many hours before each blood test. They are great with the IV's and they dont stick your child over and over. They use the IV as much as possible. We did give our own medicines and being a nurse who has worked in a hospital before, I felt much safer using my own with my own dosages. I dont trust anyone else giving my infant so much med. Tay was on many many anticonvulsants plus all of those antioxidants that I dont think they like to supply all of that because so many of them are different and over the counter. Plus some of our anticonvulsants were from the Bahamas, Canada etc. The entire visit was very pleasant. You will see lots of docs because it is a learning hospital also but they are very kind and the "big docs" have the final say. They do evaluate all of your medicines and you will see a dietician and they help with suggestions if they think you need to change. Take all the medical records you can get your hands on and take your real scans also. The more you take the better "whole picture" you give them and they can help more. We also received free tickets to sea world and the zoo. It was great!!! Good luck to you. Melinda PS, feel free to privately email me if you want more info.