Hey all, things have settled down in terms of how the boys are feeling. Avery sounds wonderful so the abx really have helped him. He is a little fussy and spasy during the day b/c we are weaning him off the valium and ultimately increasing his baclofen but we have to do one at a time so we are trying to make him comfortable with the tradition tylenol/motrin which seems to take the edge off a bit. He is looking like such a big boy these days. I cut his hair and he is really getting long. I put on some of Isaiah's old jeans and shirt on Avery (size 5 shirt and 3t pants and they fit fine) :(

Today I spent about an hr. with the school nurse and psychologist going over Avery's history since he will transition out of early intervention and into the school system in a 2 months :( When you have to verbally give his history of the past 2 yrs. it is soo overwhelming. I just cannot believe what this little guy has been through, it is unbelieveable. He is such a fighter.

Some good news is he has FINALLY gained a few ounces on the TPN (IV food), this is wonderful news. He will be so much happier now that he is thriving. It is just sad to think that this is our last way of feeding him and if his liver starts showing signs of illness then we are screwed. Let's just pray that it is no time soon, like yrs, and yrs. from now.

Isaiah sounds wonderful. He really needed the abx but his butt is still taking a beating though. He just poops about 10x a day so it is difficult to keep up with. Poor kid just cries and thrashes everywhere. You end you getting buttcream everywhere. It doesn't help that he is getting wilder by the day. My nurse was saying how it is like playing cat and mouse just to give him nebulizer treatment. It gets very exhausting. He just kills me b/c he is so normal in some ways and knows how to get what he wants.


So I know I need to start posting some new pictures. I promise some are coming soon. Been having problems with my computer reading my camera. I promise soon though.