Feeling refreshed

First I have to thank you all for the overwelming response of kind words from my last post. I have so many great new friends, and I love that we can support each other and lift each other up as you have all done for me.

I talked to my ped. today. She read the official report and it doesn't say anything specific. I told her how I felt about the seizures ruining his brain. She said over time it does effect it, but she's more worried about his lungs than seizures taking his life at this time. The only scary thing right now is if he went back into status. We'd then have to make decisions on how far we would take things. I've considered taking him to a neuro in California. I've heard two people mention him so I think he's worth checking out. My ped. will support whatever I want to do. She also thinks the SVC problem right now is what really needs our attention. Its obvious his face is still extremely puffy, and he is super cranky. We are just waiting for our hemo doc to call us about the doctors out of state for a plan.

I'm just super exhausted. I haven't been sleeping because Jax is up all night. And during the day I'm running constantly so I can't stop to take a breath. I finally was able to squeeze in a badly needed haircut tonight. After Carter's game I ran to the store by myself and got my hair cut. I feel like a new women, if only I could catch up on my sleep. Ya right.

If only I knew when I had this picture taken how fitting it is for him, my little angel with 9 lives.