Hello to everyone. I wanted to update everyone on Simon. He is a very tired boy today. We were awakened last night with projectile vomitting at 2 am. I'm not sure if I let the feeds run a bit too long last night and a bit too high a level of mls because he has been tolerating the increase for 4 days now and I think I might have overspent my limit. He did not take in much at all yesterday so I thought if he got an extra hour of night feeds that would be good. I was wrong and I am sorry to have put us all through it. It was painful to see him doing this and it brought back way too many memories of our last transplant and the 9 months it took me to make the vomitting and actual interest in food work. This is my biggest challenge as I have said in past updates and I will continue to work on it, it does not go without alot of frustration and disappointment. We are scheduling a swallow study to make sure all is going down properly and will take it from there.

Dave went back to work today. It has left us both a little sad and scared with me having to deal with all of the kids needs and wants, meds to give and care for Simon and work to accomplish for my job. I am fortunate today to have Daves mom here with me. It feels so good when she is here. But my internet connection at my office is down so I cannot even get the stuff done. So I am doing paperwork and updating here.

I have to say, through all of this Simon never seems to let it get him down. He throws up and 5 minutes later as we sit smelling like bad formula he is asking me to read him clifford in the dark. He is running around today and throwing his ball and not feeling affected by any of it. He is truly amazing as all the NEMO boys have proven to be. We ask for continued prayers that our engraftment stays very strong and steady, we go without infection, especially in the G-tube and please pray he starts to take in more calories so we can hope to be rid of the g-tube and the feeds and move onto alot of little bites all day long. Thank you all for your prayers and support. We still need all of you for this long haul. Being home is nice but we are on a long journey of many issues. God Bless you all. Love Tracy and David