April 09, 2006 at 11:01 PM EDT

April 09, 2006 at 11:01 PM EDT
Dave and I have switched spots again and I write the update from the hospital tonight. After having Merry Maids of Oak Park on North Avenue come to my house and basically leave without doing the cleaning (so if you ever are thinking about hiring them - DON'T)they left me scrambling to figure out what to do with a whole house to get cleaned in a day, I have to extend the most sincere thanks to my sister Denise, Daves sister Rose, Daves mom, our niece Dee and our friend Amanda for stepping up and coming to clean my entire house all day on Sunday. They came on short notice, gave up a beautful sunny day that they could have spent doing something wonderful with their families to lend a hand and clean my house from top to bottom so Simon could come home. So from the bottom of our hearts, THANK YOU, THANK YOU, THANK YOU. After everyone left the girls and I headed to the hospital, spent some time with Simon, enjoyed McDonalds and a mcflurry (in simons room) before the girls headed home with Dad and made a quick stop to see the Navy Pier ferris Wheel all lite up at night (Daves such an awesome dad) and home to tuck the girls in so he could begin hanging new blinds, cleaning the carpets and washing our ceiling fan that I could not reach. Its been a very busy weekend and even though the VNTR numbers were not what we wanted we are all on cloud 9 anticipating being together under one roof in another day and all of us could not be more excited. Marriana keeps saying "when is it tuesday mom? is it the day after tomorrow that we'll all be home together?" I love them so much and they have been amazing through all of this. I pray for higher counts this week. They will draw another set of VNTRS tomorrow, a few days early, to decide if they will need to cut one of the immune suppresent drugs to help Marrianas cells get a boost. Since Simons picc line was removed on Friday due to infection, he will be getting poked for all blood draws and IV meds (once or twice a month for the meds) every time we come into clinc which I think will be twice a week. Whatever needs to happen we pray that it helps b/c we cannot go through this again. Simon is chatting it up right now and I long for him to have some sort of schedule. Through it all he smiles and googles and laughs. I could learn alot from him. God Bless you All. Keep the prayers in our corner and God Bless all the kids here at Childrens, its not an easy place to spend time. I hope never to be back here. Thank you all for the cells dance participation, we are far from being done with it. Love Tracy and David