36 May 31, 2006 at

36 May 31, 2006 at 07:10 PM EDT
Well you know if you are hearing from me twice in a day that something is up. I made an unexpected trip to childrens today to have a spinal tap done on simon. The pseudo tumor was causing too much pressure and making simon very irritable and throwing up more. So we spent the afternoon there. I had alot of time to think about things and cry my eyes dry on the trip there, through the spinal tap and on the way home so hopefully I can regain my strength because we are going to need it. VNTRS are put off until Wednesday of next week becuase these past two days have been too much for simon and myself. We have to see ENT on Friday as well as surgery for the G-tube (Dave will be making this trip so I can spend alone time with the girls) which I know will not be necessary b/c Simon is going to start eating great tomorrow. (wishes do come true right) and back at it next week with VNTRS on wed and hopefully results from the TLRs to help us make our decisions for the next round. We seem to be back at square one on almost our 100 day marker. It stinks. Marriana was really crying to us last night that she doesn't want to do the cells again. What, as a parent, do you do? Its not a place anyone wants to be. I have to say thank you so much to Dr. Jacobson who rotates out of clinic next week and I will miss him and Kim who helped me alot today, even when I dropped my fresh frozen mocha coffee all over the floor, and to Katrina, and Jenny and Jane for their help with Simon and my emotions today. You are all amazing and I know you will make Simon better. So I pray and pray and know its in Gods hands, I don't know what else to do. God Bless you all and thank you I"m sure your hands are tired too from praying for us. Tracy and David

35 May 31, 2006 at 09:41 AM EDT
Hello, well yesterday was a long day at the hospital. We had a clinic appointment and Simon had to get alot of blood drawn for the TLR testing to see how Simons immune system is functioning and since they took so much I have to go back with him on Thursday to get more for the vntrs. This week has been very emotional for us. Simon had a rough weekend and we are pretty sure his pseudo tumor is back. He is throwing up and not really interested in taking much food and is very restless at night. So we are feeling deflated. After stem cell we went to GI and its going to happen where we put in a G-tube for Simons feeding. That will be directly into his stomach and at least the tube will come out of his nose and throat. It seems to be one thing after another. Day 100 would be June 9th but it doesn't mean anything to us because his counts are so low and we are looking at reharvesting Marriana for more cells. It completely SUCKS and if you can't tell I'm very angry about it.

On the good news Jack and Cooper are both doing great. These are other NEMO boys who were transplated and are finally looking to leave the hospital and go home. Congrats to you boys and their families. Being in the hospital is no fun. God Bless you all.