Clinic Day with the Sisters!

We still go to Salt Lake every week to clinic. They draw blood and check all his levels to make sure that they look good. This week the girls only had a half day of school on Fri (2/4) so they decided to come with us. Everything was, as usual, great. The girls really only wanted to come so that we could stop at In and Out Burger. Which is my usual stop after clinic.

So here you go! Burgers, fries and coks all around! Delicious. We went to In and Out Burger a couple of times when the fam came to visit on the weekends and decided that it was our favorite (and cheap) place to get burgers. Gotta love the double double!

Of course Aiden had to have coke. Who needs food when you can drink coke? Everything is pretty much the same at our house. We keep to ourselves but we have been able to go out a little more. Aiden is a trooper and we haven't seen any graph vs host at all! We appreciate the continued prayers and thoughts that go out to us and as you can see - they are totally working. Our family is planning a trip to Disneyland at the end of the year to celebrate our family and all that we have been through! We can't wait. Thank you all!

Day +100 Update

While technically Day +100 was while we were in the hospital, we didn't actually meet with the docs regarding the test results until January 26th, Day +110. The most important part of this whole thing are the T cells. In this disease it is the T cells that are broken and attacking the body. So Aiden's T cells are 98% donor cells. HE IS CURED!!!! Which is so great and amazingly awesome! While we still have a few things that are trying to work themselves out, the transplant was successful. We also have a schedule to taper him off the antirejection drug and he will be completely off it on March 30 (Happy B-day to Aiden)! As he comes off the antirejection drug we are watching for signs of graph vs host but barring that he will come of all the rest of his meds as his own immune system revs up and he can fight off infections and viruses on his own. The true test comes after he is completely off all the medications and they do a basic childhood immunization. If his body is able to build the correct antibodies after the immunization he will be perfect! We feel so blessed and it is so nice to be able to see the light at the end of the tunnel. Thank you all so much for your support and love and for all that you have done for us. We are truly in awe of how this experience has gone for us!

Ryan Dustin Chavez

This is Ryan Dustin Chavez. He is my cousin Kristina's little boy. He was born on June 30, 2009. So he is 3 months younger than Aiden. He had IPEX also and had a transplant in March 2010. Because of the success of his transplant Brent and I decided to do a transplant with Aiden. He passed away on January 24, 2011. He got an infection in his central line. He tired to fight it for 24 hours and his heart stopped. We are so heart broken for their loss and ask that you please pray for their family at this time.

Back in the hospital again!

We are so happy to be here! HA HA HA Not really! But hey waddya do? We can't complain as he has done so well and not had any kind of issues til now. So it is Thursday, Jan 13 and had was fussy all night long. When he woke up I took his temperature and it was 38.1 C. Well the rule is that anything over 38.0 C is a fever. So Brent came home from work and we packed up an overnight bag and drove to Salt Lake City. They admitted him right away and started taking blood samples and swabs of everything so they could determine what was causing the fever.

They started him on antibiotics and fluids as soon as we were settled in the room. needless to say aiden was not thrilled to be back in the hospital. He did ok but stopped eating and sleeping. That was super fun.

Most of the tests came back negative. He did come back positive for Ebstein Barr Virus (EBV - this is the one that causes mono). The rule is that you stay in the hospital until you are fever free for 24 hours. Aiden had a temperature the rest of Fri and until Sat early in the morning.

Because he didn't have a fever on Sat in the day, they sent us home on Sun afternoon. So we were there a total of 3 days. They still aren't exactly sure why he had the fever. We did learn that his EBV was high enought that they scheduled us to come back down to SLC for clinic that Wed for a special medication that helps fight EBV.

Kaitlin and Hailey were super lucky cause they got to stay with Uncle Dave and Aunt Katie. They even had Fondue night without us! They got to play with Emmy and Grandpa Larry took them swimming. I was informed by Aunt Katie that the girls took naps everyday while we were gone! Looks like a new presidence has been set! NAPS! Score for me (see how delusional I am?)

Hailey's New Room

So there is a little of a story behind this post. Before we went to the hospital with Aiden, Brent and I inherited a King size bed from Brent's Grandpa. We redid a room downstairs and put our Queen size bed in it. Since the girls had been sleeping together in a twin size bed, sharing a room with a queen size bed was awesome!

When we got home at Christmas time, Hailey decided that it was time for her to have her own room again. So she picked out some new colors and a bedspread and here you go.

We call it the candy room. The wall colors are Sour Apple and Rasberry Fizz and the bedspread and curtains are chocolate brown. So fitting for our little sugar head. Hailey loves her new room. Mom and Dad love the new room too becuase there is a lot less fighting and arguing about who has to clean up what and who needs alone time etc.

I also love the separate rooms because now they are awesome at keeping their beds made and rooms picked up, laundry put away etc. That is a huge help for me!

Hailey picked this out and had to have it on her door! Also very fitting for our Hailey!

Looks like Santa found us!

Santa was great to us this year and brought our whole family a new flat screen TV! Santa ROCKS! He was also kind enough to remember to get us each a couple of DVD's that we like and some popcorn and treats to round out the deal! Since then we have hooked up the Wii to it and subscribed to Netflicks so we can get streaming video. We even found a bunch of Spiderman cartoons which we have watched a hundred times with Aiden. It's been great since we are still on lock down til Aiden is off Cyclosporin and we are out of sick season.

Merry Christmas!

We got to come home for Christmas and it was so fun. Aunt Codi and Uncle Jared came to stay with us from Greybull Wyoming. These pictures are from our party with Brent's family. Grandma and Grandpa Goonan spoiled the kids rotten.

We got to spend a little bit of time with all of our family members. My family all got to be together this year because Kendra and her family came up to Logan and this is the first Christmas since Darren and Lisa moved back! It was so much fun to see everyone. I was really lonely in Salt Lake.

The kids were really spoiled all the way around. The girls were gifted enough money from their grandparents to buy Nintendo DS's and a game. They got some new shirts, videos, toys, art supplies, books, and an e reader. Aiden got mostly Spiderman, toys, shirts, toothbrush, poster, movies you name it! All spiderman. Lucky kids.

We went to see the movie Tron Legacy and really enjoyed it. Even Aiden loved it. Since we went on Christmas day there was hardly anyone there. Mostly we just spent time catching up with family and had a great time together.

Christmas was great and we are so glad that Aiden has done well enough that we were able to come home and see our family. This year has definitely been an adventure and while we like adventures we hope that next year is a little more boring.