I saw Dr. P and Prof B today. They both are still scratching their heads. I say that because on paper the bloods, urine and stool tests are not showing what is wrong and where the problem lies. Normally you would get a result showing that he has a certain virus, bacteria or parasite but so far nothing has come back positive. They have now tested for herpes and parovirus. These results take a few days to come through though. I really don't think he has herpes. Dr. P could see blood on Jason's lips but his lips have just been extremely dry and cracked. Anyway I just let them do their thing and test away. I am no doctor and who knows maybe he does have something like that. It must be very frustrating for them seeing Jason so sick and they have no idea how to fix them and it's their job to fix him. I am sure with time we will eventually find out.
Jason was looking a LOT better this afternoon and tonight he is looking good and his fevers are down finally. I get excited when he has a temp of 37.5 now as that is low for Jason. We had a real special moment this afternoon. The one male nurse asked if he could come and play a song for Jason. The song he played for us was "Healer by Hillsong" This was such a powerful moment for me, for this young guy to take the time out and come and play a song for Jason was so special. The song was very powerful - very powerful words. I can just see and feel how God is working in and through Jason. It's wonderful to see and hear how everyone is uniting and praying for him.
The best news ever this afternoon was a messaged I received from a wonderful lady named Kelly from Rare Diseases South Africa. She came across Jason's page through Facebook and she has been absolutely amazing with making it her mission to get the help that we need. She has managed to contact the suppliers of the Neocate and they have agreed and confirmed in writing that they will assist us and give us a huge discount. This is going to be such a help to us and such a HUGE weight has been lifted off our shoulders. We have been SO worried about how we are going to afford the Neocate with all of Jason's other costs and expenses for his feeds, medicaiton and therapies.
Temp at the moment is 37.1 - yeah wonderful. It's nice to see Jason naughty and playful tonight. The nurse has just come in to start his nebs and do his temperature and blood pressure and he is getting irritated with her because he is trying to play the piano on his iPad and she is bugging him :-)