April 13, 2006 at 10:06 PM EDT

April 13, 2006 at 10:06 PM EDT
Well I wanted to update this quickly to let you all know that so far being home has gone okay. I'm sad to say that the vntrs came back this week slightly down from last week with an overall of 44%. They decided to stop one of the immune suppresants (that puts us down to only 8 meds a day) to see if that helps marrs cells do a better job. We pray that it helps. Unfortunately Simons skin has started to get his usual redness again which for us means that the cycle is starting over and he will get red and start to peel and be extremely dry. That always makes us sad. On a good note, he is eating some food, baby ceral and baby food. Its sparatic but at least hes trying it. Since he was put back on the steroids his appetite has picked up. We are still giving him 16 hours of ng feeds (the feedings through his nose) which get us up every 4 hours to fill the bag. During the 4 hours Simon seems to not be sleeping too well anyway so one of us is usally up anyway. Still all in all its better to be awake all night in our own bed together than trying to sleep on a hospital chair and waking up with a very sore back. The girls are loving having us all home and we've been busy playing candyland, chutes and ladders, winnie the pooh uno and alot of time outside.
Well we have a 8:30 am clinic appointment at the ASCU (stem cell clinic) tomorrow and I have about 2-3 hours of work to do still so look for some new photos and updates to be posted maybe tomorrow. Thank you all for the prayers, keep them coming and for the meals and care packages. They have and continue to help so much. God Bless you all. Sleep tight. Love Tracy and David