So it has been NINE Whole weeks since Isaiah's last cycle. Woooohoooo. I don't want to get my hopes up that he is cured but he has NEVER gone longer than 5 weeks since his cycles started. I just really pray this is the end of it. I will be so angry if/when he gets another one. It is just not fair. He should not have to gone through any pain. I am just thoroughly enjoying my handsome man. Would you believe he is going to be SIX yrs old. Wow. Time really flies. He has really come a long way. I just see this boy hanging out with us for many yrs. to come. He is so very smart, amazingly handsome and funny as all heck. His new thing is trying to poke out Avery's eyes. He does it intentionally, meaning he will look at me or a nurse before doing it to get our attention and the goes straight for his eyes. What a stinker. But I love it, because it shows some typical kid behaviors.

We are going on THREE weeks and No hospital. SSHHH (Rick is away so it is not an option) Avery has been pretty stable although his pain and tightness has not gotten any better. He spent the entire day grinding his teeth today and just straightening out his arms and legs. Poor thing just looked like he was in so much pain. We gave him morphine but that seemed to do nothing for him. I emailed the Pallative dr. and I think we are still thinking about methadone as a longer acting pain med. I am telling you, it is just so heartbreaking to see your kid in chronic pain and it is just not right. His quality of life is just so limited and I refuse to let him live it in pain. I will tell you that he is getting to be quite the porker though. This boy went from not gaining a dang pound over 9 months to gaining 3 pounds in a couple of months. Sounds good right, wrong.... the fatter he gets, the more dead weight he is, the more respiratory we are finding him. He is having a harder time respiratory wise and I am sure the weight gain is not making it any better. So there really is a fine line. My little man is going to be TWO next FRIDAY. Boooohooo. This is going to be a really hard day. Every birthday brings on a grieving stage. They can be really difficult. TWO is just going to be one of those for me. Six is okay for Isaiah but his second was really hard and his 5th b-day.

Janessa saw the SW today. She was so excited. Things went really well. She gave Janessa a book about having "someone with a serious illness in the family" workbook. It is great for her. She is actually asking me specific questions about Mitochondrial disease. It talks alot about feelings while we are in the hospital. It is a pretty involved book for good for her.

So overall, things are GREAT. Just really enjoying life without being in the hospital. We are loving it. Please God, let it stay this way, we really need it.