Things have been going pretty good over the past few days. I actually think the neurotin is helping Avery a bit. He is alot happier during the day, still some dystonia but I think improved. It can be hard to tell b/c if he is not dystonic then he is so junky. So since he has had less dystonia of course he has been much more junky. We are actually FINALLY seeing a pulmonologist next week and hoping to get some tips. I am just worried if he is this bad during the summer then how is our winter going to be. Hopefully not like last winter and he did not have respiratory issues then. But, power of positive thinking right.

Sleeping is another story though. Over the past week he has not napped during the day which is very unusual for him as he usually naps at least 2 hrs. Wondering if it's b/c we took him off his am clonodine. So he has been going to bed at 5:15pm, yup you got that right. He wakes up a few times during the night but he really requires a ton a sleep.

I am excited b/c a certain p2p friend and her son who is Janessa's age is coming to stay with me for a few days. I cannot wait. Lots planned. We have been trying to meet for quite some time but one of our kiddos is always in the hospital so now seems like the best time. Seems as I will have lots of future pictures to post.

My mom is still hanging in there. She is still trying to get into drs. in Boston but getting some resistance. Unbelieveable. I just don't get it, does she have to drop dead before someone takes things seriously.