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!!

Knitting

Hopefully by the end of the weekend I will be putting some knitting pictures up of things I have been knitting. Have a wonderful weekend.

Tristan's 5 th Infusion.

Hello everyone. Well we had our 5Th infusion. Tristan wasn't feeling to good so he went in his pajama pants this time. We didn't have to have the scope test done. Even though I still think they should do it on his throat. We are going to try a medication for the acid reflux . If it doesn't work then we will go into more testing. The did add 6 more medications on top of the several he already takes. He has been getting very short of breath and not being able to breath if he runs about 10 to 15 feet. So they are treating that as really bad asthma. Which normally doesn't flare up unless he really sick. Now it's all the time. So something new to watch out for. I really hope this is all like that old saying THE ROUGH TIMES BEFORE THE CALM OF THE STORM or THE MADNESS BEFORE THE PEACE. This kid is super miracle. His spirit is like that of and old brave warrior. Even the doctors think this they said out of the case they have ever seen my son was like no other and that he was a puzzle. Tristan has had things happen that they have never seen before. 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!