It has been awhile since our last update, so here it goes...Dylan is doing okay. We have been doing blood glucose checks at the request of Stanford to monitor what we think may be hypoglycemia. Dylan's numbers are not too low, but he is suffering from symptoms when they do drop. For example, sweating, shaking, irritable and pretty much just demanding food or chocolate milk. I have started giving him a slightly different diet. I found that he can have almonds with out any allergy, so I give him those and dried fruit as well. Just things that will sit in his tummy longer to avoid having his numbers crash. We have been told that this is directly related to Dylan's liver. When the liver is sick, like Dylan's is, it does not store back up glucose. So when Dylan uses the energy from what he ate then he is OUT. Dylan will meet an new doctor pretty soon. He has an appointment with the endocrinologist. Also Dylan is suffering from hepatic encephalopathy, we think. It is hard to tell since his ammonia number is not all that high. Basically his liver is getting even sicker. It is having a hard time converting his ammonia into urea. It starts to build up in his blood and travels to his brain. He is not eating very well and is very cranky. He has been on medication to help this, but his dose wasn't cutting it. So they have upped one medication, neomycin (10ml 4x a day) and re-started lactulose (10 ml 2x a day). I was recently at the mall with Dylan and he completly freaked out on me. He told me to make the monsters go away. Climed out of his stroller and started screaming. There were no monsters. So I thought it was his blood sugar, but his number was 77. That is a little low but nothing bad. Dylan's heptologist at Stanford thinks that his ammonia caused the episode. We are scheduled to see Stanford on 02/04/08 and Dylan's GI on the 11th. I guess that is pretty much it. We will let you know how it goes with the doctors.
The Journal section of the site will be kept up to date with Amber and Noah's thoughts, feelings, and of course hopes...Thanks for taking the time to read and please feel free to comment.