BMT Day +23

Today's daily photo is brought to you by Brent and Karen King (some of our bestest friends and neighbors). If you know Brent at all, you know he always has starburst!!  I think all of the kids in the neighborhood know this little secret (okay it is not much of a secret). Thanks Kings, the picture is perfect!!

WBC- 1.6               30 days in the hospital
Hemoglobin- 9.2      52 days away from home/kids :-(
Platelets- 4
ANC- 0.9
Weight- 52.8

Ariauna's labs are a little low today. They ended up having to give her a platelet transfusion at 3:00 a.m. She has still been fevering off and on. During rounds this morning they decided they are going to keep an eye on her fever, watch the rash on her hands, feet and back and keep an eye on her stool. She has still had diarrhea so they are just watching the volume to make sure how much is coming out. They are increasing her steroid creams for her skin rash to 3-4 times a day. Ariauna absolutely hates having to be rubbed down from head to toe 3-4 times a day.  She did much better with school today and was much happier about it. After school Mrs. Julie promised her she would go out and watch her ride the trike in the hall. Ariauna got a package today and she was so excited to open it.

It was from the King's and this is the first thing Ariauna pulled out and it came with a sweet little note from Brent.The second picture is the envelope the note came in, Ariauna thought it was so cute that we had to keep it.

In case you can not tell what it is, it is a medal from the Nebo half marathon. Brent ran the half marathon with his Ariauna shirt on. The note from Brent said "Ari, Hope you are having a good day. Thanks so much for running the half marathon with me. You did a great job! The medal is for you for running with me and keeping me going. Its also for all the hard work you are doing and pain and trials you are going through on a daily basis. You inspire me and are my hero. Keep up the fight and Stay Strong!   I just cried and cried when I saw the medal and read the card. Ariauna and our family just love Brent and Karen and I continue to be amazed at everything they do for us. I really felt bad that Brent had sent her "his" medal that he worked hard to get, as I am sure it is different than every other medal he has gotten. However, after I read the card, it hit me like a ton of bricks, how sincere his note was to Ari..... She is my hero too Brent, and she definitely has worked hard. She keeps me going too and I know Brent, Karen and several other people have told me the same thing... That when they are put in a situation where something might be hard, he just thinks of Ariauna and all she has gone through and will continue to go through and if a little nine year old girl can do what she is doing, then we can make it through our hard times and her example can definitely keep us going.  Thanks Brent and Karen for making ME cry this time!!  Ariauna was so excited, she wore the medal all day long and had numerous people ask her what it was for and she proudly told them all about it. It has been a long time since I had seen a smile on her face like that one! There was also lots of other fun things in the package too.

She was also very excited about her new minion shirt and some of her favorite treats. As you can see in the rest of the pictures for today, after her shower she wanted that minion shirt on. I would have to say, she looks super cute in it! We then called the nurse to come and tape Ariauna up for her shower. Got her in and out in a hurry, it is hard on her to stand up with the IV pole and all her cords and no matter how warm the shower is, she freezes the whole time she is in there. While we had her in the shower the nurse changed all her bedding. Just before we got her out of the shower, we heard her school teacher pop her head in and say she was leaving a surprise on Ariauna's bed. When we got her out of the shower this is what Ariauna found. 

The American Girl doll store had donated some bald headed dolls to the hospital and so they were giving them to kids that were going through transplant. Ariauna was so excited to have gotten one. I am not sure what she is going to name it, as it did not come with a name.It did however, come with a certificate that once Ariauna's hair starts to grow back she can send the doll in for a one time free hair piece to be placed on it. I was amazed and once again overwhelmed with the generosity of people. I never knew that American Girl doll even offered dolls like this, but what an amazing company to think of these kids that are going through such a hard and difficult time. Today was Bingo day on TV at the hospital and so in the morning they bring around the Bingo sheets. Ariauna was in a really good mood and was so excited to play. She was even more excited when she found out that Amy (the Child Life Specialist on the 4th floor) was going to be helping on the show today. Here is Amy and Lori hosting the Game Show today.

This is a cute picture of Ariauna calling in to tell them she had bingo. They also play some other games, like guess this tune, guess the game board (which is really out of focus and they slowly bring it into focus), they also tell a lot of jokes, etc. It actually is really fun for the kids.

Once bingo is over you can go over to the main desk on the 4th floor and pick a prize out of the prize box. She was so excited to take her trike and go pick her own prize this time, because usually I just had to go pick it for her. Later this afternoon her Physical Therapist came in to work with her, they played ring toss and went for another ride on the trike in the hall. I am so glad her ANC has stayed up enough that she can be in the hall, it is good for her to have a little break out of the room.

Amy our Child Life Specialist came in today to make an "All about Me" poster to put on Ariauna's door. They spent quite a bit of time coloring on that. Today all the nurses are having to gown up and mask up to come in and out of Ariauna's room. (Every week they run a bunch of viral tests and do tests on her stool to make sure there is nothing going on and that she doesn't have anything viral. While the tests are being run, the nurses have to gown/mask up to go in the room and this is protocol for every patient). While Amy was in our room, our Social Worker Marie also stopped in to visit with me. It wasn't long that the coloring on the poster turned into Ariauna making a mouth on Amy's mask and then Amy coloring on Marie's mask. It made for a laughing Ariauna, which is always good.

After Amy left, Ariauna laid down and took a good nap. When she woke up early evening we face timed with Grandma and Grandpa, Daddy and Sadie and Brent and Karen. We did another trike ride in the hall (this is her new favorite thing to do) and worked on homework. It wasn't long and it was time to get ready for bed. So we got her all creamed up again, put on the movie Tangled and went to be early. We were both exhausted.

Today I am thankful for the angels at home again. I know I have mentioned them numerous times, but I honestly don't know what I would do without them. I will forever be grateful to Debbie Kirby in our ward for coming up with this great idea of the "Love Chain" to have Love sent to us a few times a week. And I am so grateful to each and every one of you who have sent cards, texts, emails, and packages to let us know you are thinking of us. You will never know how much it means to us, no one knows how much even a little text on a day when I am feeling so down and low and overwhelmed with the feeling of I don't know how much longer I can do this can help give me that little bit of strength and courage to keep pushing forward. This is the hardest thing I have ever had to do in my life and I am so "LUCKY" to have so much family, friends, neighbors, school teachers, ward family, the community, and even some complete strangers there to give me that little bit of extra love that I just might need on that exact day to help push me forward. My heart is full, and I cry every time I think about all the love we are getting from people at home and our new friends here in Minnesota. May each and every one of you be blessed for all you are doing to help us on this journey! Much love being sent to you all.....From me and Ariauna