April 04, 2006 at 11:57 AM EDT

April 04, 2006 at 11:57 AM EDT
Hello everyone. I wanted to give you a brief update because yesterday and so far today are good days. Simon has been smiling a bit in between his crying fits and seems to be more alert since his blood transfusion. Not having red cells can really poop you out. They told us that they are going to try and get his meds switched over to oral and start to taper off on the methadone in hope that his fontinal will continue to reduce in size and the pressure will be gone from the extra fluid in his spine. We are so ready to be discharged. It doesn't come without concern about bringing him home and keeping his environment safe and germ free especially with the girls being walking germ magnets. We opted not to send them back to preschool this year but they still are catching bugs. Simon will have to be a bit isolated for another 70 days as this is still a crucial period for his immune system. He will be coming home on about 10 meds a day, ng feeds and possible TPN feeds which are done through IV. We are going to be taught how to do and take care of all of this. That will add another "job" to my already hectic life but if it gets him home safely, we will just have to do it and chart it all out. At least we'll be together. He keeps growing cultures out of his picc line and they are trying to avoid having to replace the line again. Its a vicious cycle being in here and having so much medicine put into the picc lines and blood being drawn out everyday.

So with all of this our hope is to get home by early next week. AHHHHH I need to get the cleaning done. So much to do. We do vntr draws again tomorrow so you all know what that means, tonight you must partake in the "Cell Dance" and pray that marrianas cells are more plentiful and Simons are leaving the scene and also if you would pray that all goes well and we make it home next week. Thank you all for your hope and prayers. It means alot to know you care and we are not alone in our hope for Simon. Love Tracy and David