It seems that Avery has been in chronic pain for months. This is so heartbreaking. Poor kid has been putting on a happy face when he can but he has been hurting. So very sad. The reason I know this is b/c he is so much more relaxed and sleeping better since we added the methadone. Wooohooo. I will tell you that this Pallative Care team has been vital for our family. They are so caring and Listen to our needs and concerns and actually take action. This is so rare to find. Don't get me wrong, there are many great drs. and they mean well but they are not typically concerned about pain in kids who are medically involved, especially since they cannot talk. Can't tell you how many times the drs. have suggested tylenol or motrin. Hello, my kid is way beyond those meds. Bring on the narcotics. Whereas this team thinks it is unacceptable of a child to be in pain and will treat it. Avery was actually moving his legs more today. Man, when I look at pictures of him from last year, he was able to do so much more and now he can barely move any of his limbs. Just look at his birthday last yr. above. I sure hope he gets back alot of those skills. He cannot even bring his hands up or near his mouth at all. We have taken HUGE steps backwards and I hope that treating his pain will change some of these things and get my little guy back. Although a social worker in the hospital told me that I needed to define the "new Avery". This is something that I still have difficulty with b/c I still hold hope that I will get some of the old Avery back with persistance. See why I am a bit sad about my little man turning two. Also for the fact that they old special needs kids get the less people want anything to do with them. At Avery's age he is still a cute baby but before long that wears off and they turn Isaiah's age and all you get is stares from people. They are afraid to touch them or talk to him. It is really sad and I know people don't know what else to do except stare or avoid. But this is our world and we will always get the stares. I swear I want to get a sign on the boys wheelchairs that say "instead of staring why not say Hi to me". LOL.

Don't know if I told you all that I am going to a Conference on Mitochondrial Disease in June in Indiana. I cannot wait. I will learn a ton of stuff and be able to talk to the top mito dr. around the country and pick their brain. I am staying with some women that I met through one of my sites. It is pretty exciting.