March 25, 2006 at 09:52 PM EST

March 25, 2006 at 09:52 PM EST
Wanted to let you all know that Simon was fine through the GI scope procedure and the new picc line was placed on Friday. The girls, Dave and I spent the day at the hospital waiting for Simon to come out of recovery again. The girls did great actually. Heidi, the childlife specialist that they have come to know very well took them for some fingerpainting and projects so that helped Dave and I out a bit. I was not happy when I saw him in the recovery room. They had replaced his NG (feeding) tube while he was under sedation and Simon had been crying when we walked in. I noticed his crys seemed to be getting more faint and as he was still out of it I wasn't sure what was going on but something didn't feel right. I took his pacifier out of his mouth and saw the NG tube coiled up in the back of his throat. I panicked and told the nurse to yank the tube, after he looked he was like oh and started to pull it out. I was not happy. It turns out during the procedure they had to insert a breathing tube because he was so little and as they pulled it out they pulled up his NG tube with it. I was pissed that they didn't even check in his mouth after doing that. So just proves you always, always have to be there with him no matter what. We got him back to his room and Dave actually ended up having a rough night with him. He was up alot. The doctors tell us he is having a bit of withdrawal from coming off the narcotic medicines hes been on for almost 2 months and is very restless. Today we decided to try and start getting him on a more normal schedule so we are limiting when people can come in his room. Today he took two good size naps and I pray for Davids sake he sleeps pretty well tonight. He has been eating ceral and keeping it down and since we switched formulas today, we are hoping he starts to enjoy the new one. Dave said it tastes nasty so its no wonder Simon doesn't want it. Hopefully a few more days and Simon will be eating and sleeping better and keeping food down. So far he is tolerating the feeds.

One of the stem cells doctors told us today that he is confident that with where Simons counts are today that he expects him to have 95% of Marrianas cells in 60-70 days. We are hopeful and pray for that to be true. There is no talk of sending him home but we are anxious to get him here. I miss being a family in our house and really can't wait to be on lock down here at home all together. So we continue to pray and hope.

Today our good friend Patti came over and painted fairies on the girls bedroom walls. She told them Marrianas was the giving or donor fairy who helped Simon and Isabel's was the helper fairy who helped Marriana be brave. The girls liked the concept and talked about tonight again before going off to bed. Thank you Patti. All our friends and family who are supporting us....we thank you so much. Please keep praying. God Bless us all. Tracy and David