Day +84

Today's daily photo is brought to you by one of Ariauna's best friends Ashlyn. She drew 84 rainbows all by herself. Wowzers, that had to have gotten pretty boring after the first twenty. Thanks Ashlyn, it is a beautiful picture and we sure miss you and your smiling face!

WBC- 6.8              
Hemoglobin- 13.0
Platelets- 200
ANC- 3.2
Weight- 51.1

Today makes 113 days away from home and it is getting harder and harder. Things at the RMH have changed so much, so many new families coming in and so many of the familiar ones we knew have left or are inpatient having their transplant done. Today was a busy, busy day. We got up this morning and got the kids headed off to school, then I woke up Ariauna and Jaxon. No sleeping in today, as it is a clinic day. I am excited to see what is happening with Ariauna since it has been a week since we went last time. I am enjoying this only having to go to clinic once a week now! Yay!! I hope it will stay that way!  I  got them ready for the day and got them eating breakfast. After breakfast we headed out to catch the shuttle. It was freezing here this morning!

 We thought we were going to freeze, it was so cold. This is a big change in weather here. Things at clinic went well, other than them being behind. The doctor was behind today, so it took a bit to be seen by her. They automatically got Ari back to draw her labs, get her weight and do her vitals. Her weight went up 1.1 pds. Yay! I was so happy! I have been so worried about her weight and them wanting to put her back on her feeding tube during the day. They put us in a room and there we sat for quite awhile. I don't think I have ever known our doctor to be this behind. I finally had to call Ariauna's tutor and tell her we were not going to make it back for school today. At one point they did have the P.A. come in and go over things with us and he chatted for awhile. He said again how great Ariauna looked. We talked about her weight a little bit and he said he would have the dietitian come in and chat with us. I don't really like talking to the dietitian as she tends to stress me out about every little ounce that Ariauna might have lost. All of Ariauna's labs have continued to go up on their own and all continue to be in the normal range. Her platelets even hit 200 now so they are even getting more normal.  The P.A. finally left and the dietitian came in, she was very pleased with Ariauna gaining some weight. I am sure some of it had to do with them increasing the amount of calories in the formula she was getting, but Ariauna's appetite has definitely gotten better. I definitely think the appetite stimulating medicine they put her on is helping. The other day she ate 3/4 of a corn dog. Which at home she would only eat one corn dog, so things have improved a lot. There was also another day last week that she ate the whole plate of food I gave her, which was more like Jaxon portions of macaroni and cheese with two nuggets and some corn, but she ate it all. Yay, for little miracles!!  I am proud of her and for her effort in trying. She is also drinking a lot better and has been good about drinking some other things besides just water. Funny, that normally doctors are advising you to stay away from sugars, fats, soda pop, etc. They usually suggest you drink a lot of water, yet Ari is being told to drink soda, milk, anything to give her some more calories and pretty much being told she can have candy for breakfast, lunch and dinner and potato chips in between every meal is just fine too.  The dietitian said that if Ariauna can get up to 53 pounds (which is about where she stayed during transplant) by her appointment next week then they will consider taking one can of formula off at night and see if she can still maintain her weight. That is quite a bit of weight for one little girl to gain, so not sure if it will happen in one week. But at least they are thinking about starting to work her down off the formula. Hopefully her little body can keep eating and she can get off that tube feeding. Finally we got to see Dr. MacMillan, I just love her to pieces. She is so great and no wonder why she is running behind. She is so good to take the time that each patient/family needs to answer any questions and make us feel good about things before she leaves. I appreciate that so much about her! She is a very busy doctor and yet, she takes the time to sit with each patient. We went over all of Ariauna's labs, we talked about her cold/cough and they listened to her chest and her lungs which still all sound great. We talked about her medications she is still taking and decided it would be okay to try to take her completely off her prilosec and see how she does. We talked about her eating and the feeding tube, and then I had a little heart to heart about some more serious things that can happen with transplant and some of the not so good things I am seeing and hearing from other FA parents. I told her about the two that have recently been diagnosed with cancer. She reassured me to just take it a day at a time and to try not to focus on the negative things. She told me to try not to read/listen to a lot of other FA stories, because every one has their own story and no two are exactly the same. She reassured me how awesome Ariauna has done and that hopefully she will just continue to do great. She also told me that in the 159 cases that they have transplanted here, only 4 of them have gotten some type of cancer. It made me feel a lot better, at least today and at this very moment. We also talked about our chances of going home. She sees absolutely no reason right now that we should not get to go home. In fact, Ariauna's bone marrow biopsy and her 100 day appointment is on Tues. November 26th so she said if we wanted to be home for Thanksgiving she could possibly release us that day to go. Unfortunately, if those test results show any problem at all that something is not right or that she is not 100% donor cells then we would maybe have to come back and we can not afford that right now. So we will just hang out here a week longer to make sure all is well with her bone marrow biopsy and get the final okay to go home. We ended up not getting back to the RMH until just after 1:30 and Ariauna's schooling would have been over at 1:30 so we did miss the whole thing. I think it might be this way the next few Tuesday's as we will be meeting with Dr. MacMillan herself these next few weeks before we get released to go home and you pretty much take what ever appointment you can get with her. Once we got back to the RMH we fixed a quick lunch and then laid Jaxon and Ariauna down for a nap. I worked and did some phone calls while they were napping. I have a few more jobs that are due on the 15th, so I was trying to get them done. We got a package today from our neighbors Brent and Karen. So when Austin and Sadie got home we let the kids open it. 

The girls were totally thrilled, there was a bunch of jewelry that Annie in our ward at home had donated, so Brent and Karen decided that Ariauna and Sadie would love it and since there was so many duplicates, they figured they could share with some of the cute little girls around the RMH. The girls were so excited and you can tell by Jaxon's happy face that he was thrilled to find the star burst that Brent had thrown in. Thank you, thank you for the fun package. All the little girls around the house are enjoying the jewelry! Tonight we went down to have dinner and then there was a special activity, so of course Austin did his normal thing (playing his ipad) while me, the girls and Jaxon participated in the fun activity. Tonight they were doing self portraits using little squares of paper. It was a lot of fun and there was just a few other families who participated tonight. I am so grateful for all the activities the RMH plans and prepares to help our family pass the time of being able to go home. I can not even imagine how boring it would be if we were stuck in a little tiny hotel room with nothing to do. 

Austin did not make his, Sadie made it for him. Jaxon only lasted about 5 minutes and then he was off to play with his friends in the castle. So no picture of Jaxon and we did not have time to finish one up for him. I did do a close up picture of the art work so you could all see them closer in person. We had a great time spending time together tonight working on our pictures.  After the activity we headed upstairs and got everyone ready for bed. I am still making Ariauna sleep out on the hide a bed because of my cold/cough. She does not like it, but I would feel horrible if she got sick because of me. We had to wait for Ariauna's bomb (microfungin IV ball) to run for an hour and then I crashed too.

On to funner and more productive things today. Jerry got the basement done enough that he could order the carpet. So today was the big day that the new carpet came for the basement. My dad was kind enough to meet Jerry at the house. Jerry answered all the questions the carpet installers had, and made sure it was the correct carpet they brought and then he went back to work. My dad hung out all day at the house keeping an eye on things so that Jerry did not have to miss yet another day of work. Here are the pictures Jerry sent me when he got home today.

Today I am thankful for my best friend and husband. He is the one I laugh with, dream with, cry with, and love. He is an amazing man and an amazing father and I want him to know how much I love him. While this journey has been hard on all of us, I have to admit I think he has had one of the hardest parts. He has been at home, being Mr. Mom for 2 1/2 months by himself (with the help of my parents during the day while he worked, thank you mom and dad) and he has kept working full time, and started and finished a full blown basement remodeling project so that Ariauna can have her own room when she gets home (less germs). I can not imagine having your wife and daughter thousands and thousands of miles away and knowing you can not be there because you have to hold down the fort at home. He has done an amazing job and is one strong person. Every time he came to visit and every time he had to leave we all shed tears. I knew I married my best friend, but I never knew we would have to endure the things that we have. I know I could not do it without him and today I am SO grateful for the wonderful man that he is. I love you Jerry and can not wait to be together as a family again