Tristan's 10th Infusion

On July 17th was Tristan's 10th infusion. Well let just say it was a bumpy day. Tristan was fine when he woke up, but shortly after we started the infusion he started not feeling well and running a fever. Which has happened before. He did start feeling better by the next day. Well normally the doctor and his interns disagree on some thing with my son. The doctor and I are usually on the same page and interns on a different page. This time the interns that have disagreed on many things finally are seeing the light and agreeing with his doctor. They actually said that my son isn't following anything or any study that they can find. They proceed to tell me my son is outside the box in every area. Which means the treatments aren't going the way they thought. They told me to prepare myself and I said I've been prepared I don't think you were. There were some test results that came in which weren't great news. The treatments by now should be working more then they should. His Doctor is the best in the world and told us that he thinks Tristan will never get to come of his antibiotics and he's more then 99.9% sure of that. Now when every he get sick we will have to get double the antibiotics (which we do already and have always done) but now this will happen on the first 24 hours instead of waiting like the interns like to do. See most people who are sorta like my son have one or the other wrong not all antibodies plus B memory cells and other things. He also said the deadline to even think about coming off the blood infusion isn't until the age of 15 or 16 if they don't switch him to the life time side before that. You only get to come off when cured! Not what anyone wants to here. Oh yeah a miracle will happen with my child God will fix him!

Sorry if this isn't making much sense but It's really complex to explain.

The pictures above is him drinking hot chocolate but he does love his coffee to!

So God Bless Everyone who is praying for my son and family We ARE VERY GRATEFUL!

Please people keep donating that blood and plasma ! You are helping my family. I am very grateful to everyone who has ever donated. God Bless you all in every way!!

Number of Donors who have helped my family so far: 450 people !

Tristan 9th Infusion

Sorry for the delay in post buzy time around here. Next Infusion is July 17th

There was no change in his treatment plan except we are back to not having an end date again. This infusion was June 19Th. Which was a Friday . Tristan wasn't feel good this day at all. He woke up throwing up which he continued to do most of the day. Then when we got there the put his stint in his hand and it bent in two which then lead to him losing a lot of blood. Then on the second try they got the tube all in place then he just started bleeding around the tube and enough that it sent some of tubes back out. Needless to say he lost a lot of blood ! They were able to finally get everything in place and finally stop the bleeding they have no ideal why that happened . We have never had any problems with getting everything started. What made matters worse is he was throwing up on top of it. I will say by the end of the day he was back to feel better and his normal self. It's amazing how things work. The above picture was taken at the end of the day.

So God Bless Everyone who is praying for my son and family We ARE VERY GRATEFUL!Please people keep donating that blood and plasma! You are helping my family. I am very grateful to everyone who has ever donated. God Bless you all in every way!!