Oct and Nov updates coming soon!

I will be updating the October and Nov updates together. Nov is our 1 yr Anniversary of the infusion which will be this week. God Bless !

Tristan's 11 & 12th Infusion updates!

Well let's see where to begin........ The 11Th infusion went OK except they had a very hard time getting the tubing in. Plus Tristan was sick and wasn't feeling well anyways . Which makes things a little harder. He went back to school that Monday and we had some serious issues with the nurse again. I will just say I hope and pray justices is served very soon to her. Which I am sure it will be because I am really ticked and her and so his Tristan's Doctor. I must say if your in the medical field you should do what the doctors ask of you and not take it out on the child. I won't get into what happen but it was not good and MY SON NO LONGER GOES TO SCHOOL THERE!!!!!!!!

Tristan is now being home schooled . Tristan and I love it! WE are using the A BEKA program which I must say I so Love . I am sad that he will miss his friends but the family's that we know will keep in contact with us.

On to to the 12Th Infusion. No the 12Th infusion is not the one year mark. We started infusion the first week in NOVEMBER OF 2008 . This infusion went really well Tristan was still sick from last month he has a infection that doesn't want to GO AWAY. They again had trouble getting the everything started . Finally got it and going, but at least this time he wasn't throwing up on arrival . He's got a swollen throat with visible white pockets that make hard to get rid of. They have test him for everything and say it a viral thing. Which normally for Tristan can take up to 3 months or better to get rid of. We are on month number 2. Plus he still getting sick about 5 days after the infusion which he shouldn't be. They have change his asthma medications to something stronger b/c he didn't do so well on his breathing test. He is also still taking all other medications to. Now that we are homeschooling him it takes some of the worry out of maybe not getting so many infections. Plus if we need to get infusions more often we can or if they need to put the port in .

We were able to take Tristan to see the races the day after his infusion..... He did really well for the first hour and then started having a hard time breathing so we bought a towel and made him a mask cause ding bat me didn't pack that in my bag. He has so much fun! He's always wanted to go and when we tired before he didn't make it but 5 minute's before getting sick and heading to the hospital. I hope we will get to take him to do other things .....

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!!

Update!

I will be updating very soon about Tristan's 11th infusion! There is alot of things I need to figure out how I want to put it out there.

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!!

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.