Tristan's 7th Infusion

Let's see where to start. Well Tristan has been sick since the 10Th day of his 6Th infusion!! So he didn't get to come off the antibiotics . They doubled his antibiotics to help get rid off the infection:( Well many things have now changes as well. This infusion was on April 24Th,2009. The next one is on May 19Th,2009. Well lets just dive into it. Basically they told us that after he gets over the infections he has now then we will go back to the normal medication levels and then we will see how many days after the infusion it takes him to get sick . Since we started this whole process it usually 10 days or less after the infusions and every other month. It's only every other month because those odd months he's put on double medications and stronger medications for 30 days to get rid of the infections. With out that he wouldn't get over them. So once we determine how many days it takes him to get sick then the doctors will decide if we need to start having the blood infusions every 2 or 3 weeks instead of every 4 weeks like we do now. If this happens then everything will change again. They are doing everything they can to try not to bump up his blood levels. He's already only 25% away from the Max. levels of blood and it's been this way sense the 2ND infusion. Once he hits the Max. (which hopefully he will not) then he will switch to having this for the rest of his life. They almost went ahead and bumped him up on this infusion but with talking and trying to figure out some things they decided to try seeing how long it will take for him to get sick after the infusion on May 19Th. Unless he still is sick by May 19Th then it will all change once again. So today is May 7Th and currently still sick but looks like he's finally starting to get better over this week. They also said scratch the June 2010 date to Now they said they really can't give us a official date anymore because to many things keep changing it . The doctors also said Tristan is like a puzzle and that everything that has ever worked or with this treatment is either not working or doing something totally different on my son then it has on others. I still have hope that my son will have his miracle and god will provide for us. 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!!

Tristan 6th Infusion

Well where to start. Let see ummmmmmm ......... As you all know this was Tristan's 6Th infusion. Everything went good. Tristan is such a trooper. He doesn't even cry when they put the tube in his hand . Tristan is a very strong child and I think sometimes stronger at handling this than his parents. We did find out some good and sorta bad news on Friday. We have been talking with doctors over how long these treatments will go and when he will be able to quit taking the medications he's on. So we finally got sort of a time line. Lets start with medications . Hopefully on the next treatment (which is on April 24Th) he will get to come off his Antibiotics that he takes everyday. (he has taken these antibiotics every day since around 8 months old) Mind you this will only happen as long as he doesn't get sick this month. If he does get sick this won't happen at all. This would be a huge step. The down side is if he gets sick then he will go back on it plus possibly have the amount of the infusion blood bumped up to the max.

Now the part that seems horrible to think about. Tristan will be getting Infusions until June or July of 2010. Provide everything keeps going good. He will still be getting them every 4 weeks like clock work. What will happen then is they will (provide every things is still going in the right direction) stop treatments for a couple of months and then retest his immune levels to see if he is healed or not. If his levels aren't normal then they will switch his diagnoses and Tristan will probably have to do these for the rest of his life. We also found out that if Tristan gets a major illness he will then go to getting treatments every 3 weeks or every 2 weeks. So lets pray that this stuff all works the first 22 treatments.

Another scary fact is about the donors. Every treatment is about 45 people to make his blood for his infusions. I get this number because he receives 1 full bottle and a 1/2 bottle and it takes 30 people to make 1 full bottle . Are you with me so far. Lets do some math in total my son will be getting 22 treatments. 22 x 45 =990 Different People will have been injected into my son that I have no control over. This seems totally crazy!! But I am glad and very thankful there are people donating. Secretly I wish someone gave me the wrong information

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!!

Tristans 4th infusion

Well we had are 4Th infusion on Jan 30Th. Everything went as it has in the past . We are now scheduled through the end of the year for infusions. They are still every 4 weeks. His next infusion will be Feb 27Th. They are also keeping his levels of blood and medications the same . Which is 1 1/2 bottles of blood. Medications are staying at the higher levels to. They did say that he can't go back to just one bottle we will be adding more bottles if he continues to stay sick. We are talking with the doctors also about getting him a scope test done on his throat and stomach. They think he may have acid reflux and that is what is keeping his esophagus and lymph nodes swollen. The test will rule out anything else . I just hope the acid hasn't done to much damage to his throat. Especially because its been this way now for 5 months. If in fact that's what the problem is. I will post after another update after the 5Th infusion. 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!

No pictures due to goofy system not working yet.