So Avery's pallative care dr. called me tonight on my cell. Of course, the heart starts beating fast when a dr. calls you on a sat night. I talk to her via email while she is on service (1 month rotation), when we make med. changes we talk almost daily to get his dosing right for comfort. Since increasing his methadone, we have not seen any change in his dystonia and spasms. He gets these around the same time daily. This has gotten progressively worse of the past couple of months. She said she was concerned b/c when I saw her at his appt. last Friday (she held his the entire visit) she has noticed a significant decline in his tone and posturing over the past 6 weeks. She wanted to be alot more aggressive with his med. changes b/c we are not getting it down. We will be starting the neurotin on Monday instead of a couple of weeks. I had mentioned to her about the Leigh's and progessive dystonia and again she confirmed his decline in neuro symptoms. It's like a stab in the heart everytime you hear the words or the concern in someone's voice.

Sometimes I think I am just blowing things out of proportion and he is really not that sick. But then it is confirmed by someone else that he really IS that sick. It is probably so much easier to live in a world of denial but that is not me. I need to know. In some way I think if I know all ahead of time that it will lessen the blow. Doubt that is the case. The long and short of it is, there is no way to lessen the blow. Again, it is what it is.

On a positive, I am very blessed to have such a caring team of drs. working with my little man. I know they want the very best for him and it is comforting to know that. Again, we just take it day by day.

Big Congratulations to my cousin Erik and Tamika, they welcomed the 2nd baby into the world tonight. His name is Jackson Carter (JC) so cute. Can't wait to see pictures. Many more baby announcements will follow in the next few months.