BMT Day +26

Today's daily photo is brought to you by the Mason's (One of Ariauna's best friends and her family). Love it!! Thank you for the cute photo!

WBC- 3.3               33 days in the hospital
Hemoglobin- 8.9      55 days away from home/kids
Platelets- 10
ANC- 2.4
Weight- 52.14

Ariauna ended up needing platelets and so they gave them to her at 4:00 a.m. this morning. Then we went back to sleep until 9:30. I talked to our nurse late last night and told her I was so worried about Ariauna being able to take 16 different medicines by mouth everyday. She asked me if we would be opposed to having an NG tube put down her nose. She said all of this right in front of Ariauna so Ari about freaked out. She was not really thrilled about that idea. She remembers them putting the NG tube down her nose at the hospital in Utah. She was awake and she remembers having to swallow and gag to get it down. It was pretty unpleasant. The nurse asked Ariauna what about if they put her out for it so she did not feel it. We discussed how then her medicines could all go down the tube and not have to be taken by mouth. I am so worried, as we already have to fight her to just get her Sirolomus down (the one that helps her not reject the transplant). Yesterday we added two more orally and it was a fight and took a lot of bribery before she got them down. I just feel like our next several months are going to be nothing but a continual fight to take medicines all day every day unless they do a tube. The nurse is the one who kind of pushed for us to do it... They have seen the way Ariauna acts taking her meds and how some days she literally fights me. So today during rounds we talked to the team about trying an NG tube and because they would have to put her out they have decided to just go ahead with the NJ tube. That way if she needs to eat through a tube, it will already be there and they won't have to knock her out again. So they have set that up to have it done tomorrow. They also want us to up her creams on her skin for the GVHD skin rash to 2-3 times a day for awhile.  We finally got her medicines down her, but it was shortly after that she threw them all right back up. So frustrating.... I am glad they are going to do the tube tomorrow as hopefully it will help with that too. Hopefully this means we will get out of here a little sooner. Because if we had to wait for her to be able to take 16 meds orally and keep them all down, we might be here for quite awhile still. Ariauna did have yet another dressing change because the other one was coming off way faster than it should. They have to be changed at least once a week, but sometimes they start to come up and there should never be open air getting to the placement site. So it will be replaced again today!  Ariauna decided she wanted to go for another trike ride so off we went. When she say's lets go, we go!!

The Gould's came to visit us again this afternoon. For those who don't remember how we met them, she is the local Primary President here in Minnesota and so we met them through the church and they have become so special to us. They have been so good to Ariauna and I both and have just taken us under their wing and made us feel welcome here in Minnesota, at church and in their home. While they were here visiting with us, we were also lucky enough to be able to partake of the sacrament. One of the young men leaders from the same ward the Gould's live in, brought a couple of the young men over to the hospital to bless and pass the sacrament to us. It was wonderful! It has been weeks since Ariauna and I have been able to partake of the sacrament. I am so grateful for these young men and their leader and for their willingness to take time out of their Sunday to bless someone else's lives. It meant a lot to me to hear the sacrament prayers and to be able to once again partake of the sacrament. What a beautiful blessing! We spent some time tonight with the Gould's playing Ariauna's personalized memory game, play-doh and garbage (a fun card game). We are so grateful to them and their kindness. Ariauna just loves the girls and has a great time when they come to visit.

After they left, Ariauna took a nap, she was exhausted. Everything still takes a lot out of her even little things. She did much better with taking most of her medicines today. However, this evening she got in quite a bit of pain, because she refused to take her pain medicine at 6:00 p.m. Finally before bedtime I was able to convince her to take it again. Hopefully it will make for a decent night of sleep. We had a pretty lazy evening, Ariauna watched the Disney station while I tried to blog a little bit. We both ended up crashing pretty early!

Today I am grateful for the gospel and for the blessing of being a member of the church. I am so grateful to parents who raised me in the Church of Jesus Christ of Latter Day Saints and for their examples. I can not imagine my life right now without knowing the church is true. I can not imagine going through this journey we are going through without the knowledge of  knowing I am a Child of God, without knowing that I am a Daughter of a Heavenly Father who loves me. I can not imagine not knowing that my family can be together forever. I can not imagine not knowing I have a Savior and a Father in Heaven who love me, and who love Ariauna and who want the best for both of us. I know this all without a shadow of a doubt. I am so grateful for my testimony of knowing that Heavenly Father has a plan for me, that he has a plan for Ariauna, that he has a plan for our whole family. I am grateful to know that I accepted Heavenly Father's plan and that I chose to come to this earth, despite the trials that I would be given. I would not change it for the world.... Yes I am going through the hardest thing in my life, something I would never wish upon anyone. Yet, I know I will and have learned so much from this trial in my life. I am worried about what will happen next, I am worried about what is to come in the future for Ariauna and our family. But I also have a calm feeling and know in my heart that my Heavenly Father and my Savior love me and will be by my side every step of the way and that they will NOT leave me alone. I feel comfort in this, and feel comfort in knowing that no matter what happens now and down the road, I can be with my family forever...... And that brings me great comfort. I am so very grateful to be a member of the church and am proud to say I am a Mormon. I am grateful to know that though the church might not be as prominent in Minnesota, there are wonderful members that have reached out to Ariauna and I and have touched our lives for the better. I am so grateful that no matter where we go in the world, we have our Church family too. We were so nervous to go so many miles away from home and have no one we knew over here, but from the moment we got off the plane in Minnesota we had our church family there to greet us and several others we have met since. I am grateful to my Heavenly Father every day for the blessings that I have been given in my life. I have so many to be thankful for but the gospel, my family and my closest friends are always right at the top and I thank him every day for the blessings I have been given. Sending our love to you all!