Tristan's 8th Infusion

Tristan's 8th infusion was May 19,2009. There has been no change in anything this treatment. We did get to go back to all his normal levels of medication. I haven't posted because I have been super busy. Less then 6 days after the infusion Tristan got sick which then caused him to miss his last couple of days of school. We did get to go the very last day of school because it was a half day and he was able to make it through the day. He currently isn't sick and we have the next infusion on June 19th which is right around the corner. I will be posting more details of everything as I find them out. I do not have pictures this time because I forgot my camera like a ding bat and forgot my phone had a camera. Plus this was the first infusion were just Tristan and I went . Usually his daddy goes to but had to work while there was work . God Bless everyone .

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!!

Broken Bones!!

Well it's 2 minute's till midnight on Monday evening or should I say Tuesday morning before I am done typing this. We have a first in our house BROKEN BONES!! Now would you believe it's not my son .(yeah) Its' my daughter. She has managed to break a chunk out of the bottom of her foot on the outer edge. How you ask I have no ideal . She did this on Sunday or at least that is what she is telling us. This child has crazy high pain tolerance like she doesn't feel pain and if she does then something is wrong. Even the E.R. Doctor thought she was faking and asked if she was really hurt because she could stand and do everything the doctors asked and just said it hurt a little. Plus they thought I was just saying she had high pain tolerance. This wasn't the childerns hospital where my son goes either this was a local one. Had I drove 70 plus miles to his hospital they would have not question her pain levels because my son's like that to. Well the doctor was very surprised when she looked at the X-Rays. She said you should be in a lot more pain then what you are.Matter of fact you should be screaming. Then the doctor said she snapped the tendon that goes up your calf and down to the outer part of the ankle and some how in that process it snapped a chunk out of the bone on the outer bottom of the foot. Needless to say the doctor was very very surprised and couldn't believe what she was looking at on the x-rays. So we have a temporary cast and have to go see a ortho surgeon. Hopefully she won't have to have surgery but we will see. I was hoping that neither of my children got my pain tolerance but I now pretty sure they both did.

Knitting

I just set up a new blog for knitting and for Yummee Yarn. I will be doing both blogs from now on . I know I must be crazy right? Well I just have been thinking about setting up a blog for my yarn and I finally done it. Even though it only took Three full years. I will try to work on getting everything in order for it all next week. Plus maybe even a contest . I will be updating on My Passion to about my son, life in general, an knitting , and of course yarns. So check out both blogs! God Bless Make sure you go join me in the other blog. Leave me a link so I can follow you on the Yummee Yarns blog to. I put Yummee Yarns Knits blog under my daily reads so click away :0) God Bless!

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!!

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!