Day 9

Day 9 Part 1. I am happy to report that we had a boring night! William's vitals are holding steady and his breathing has evened out a little more. William has managed to discrete almost 2 liters of fluid in the last 14 hours. The diuretic is obviously working and hopefully William's belly and scrotum will shrink in size soon. William's stomach was measured at 69 cm last night. Grandpa arrived yesterday! YIPEE! William was so happy to see him. Grandpa's assignment is to get William out of a bed a little more and hopefully boost his mood a little more too. Randell (Daddy) was here again last night. It feels so good to have the three of us together under one roof. There is a bond between us that I can not describe. This weekend we will be spending more time together and my goal is to go to church with Randell this weekend. I have not been since this whole ordeal unfolded. Dads need to make things better and fix what's wrong. Unfortunately Randell cannot fix this and it is so hard on him. I have asked him to get the house ready for William, hopefully this keeps him busy and his mind occupied :) William will be at the hospital for at least 3 more weeks but, when he does come home his room needs to be downstairs (hardwood floors instead of carpet). We will also need to super sanitize and clean everything. The dogs need a fenced area built for them so that they can stop spending so much time inside. We need to get an air purifier and replace all our HVAC filters. Please keep Randell in your prayers too. Day 9 Part 2. Another fantastic day! William got out of bed three times today! We did not do any actual walking, but William did spend several minutes standing and sitting straight up. His scrotum is still extremely swollen so sitting on a toilet (not that he did anything) was the most comfortable thing he has experienced all week. :) Due to the blood in his urine, his platelet count (50) is down so he is now receiving some via IV. He is also receiving lipids and an increased TPN (Nutrition through IV). To treat the current sores in Williams mouth and prevent any more of them William is gargling with BMX and Nystatin every six hours. Randell spent the morning and afternoon with us. It was great! William loves his daddy so much and misses him when he's not around. Randell hates leaving us and having to go home but, at the same time we know and realize that its a necessary evil and our other responsibilities need to be taken care of. A lot of you have volunteered your time and resources in helping Randell out with getting the house ready for William. We really appreciate this and WE WILL be contacting you to take you up on all your wonderful offers. Right now Randell and I are just trying to figure out our game plan and schedules. Jaco (my south african brother from another mother ;) ) and his wife Stephanie spent some time with us this afternoon and brought William some airplanes to hang in his room. YEAH! All the prayers are working! Everyday there is a new blessing and miracle that we are so grateful for. We ask that everyone please continue to pray for healing! I read about another DSRCT patient today that is also NED (no evidence of disease) so there is a ton of hope out there for us! We love everyone so much and we appreciate every prayer, casserole, e-mail, guestbook entry, hug, coffee, and positive thoughts. A special thank you to Jeanette and her husband Johan. Jeannette recently went through chemo and has been a fantastic source of information and recommendations for us! I also want to thank them for the puzzles and games that were sent to William. Keeping his mind occupied with something else besides pain and TV is a challenge