BMT Day +20

Today's daily photo is brought to you by Brandon and Zachary Leishman (Ariauna's set of twin cousins). Cute idea boys! Thanks for the cute photo! Love and miss both you crazy boys!

WBC- 0.9               27 days in the hospital
Hemoglobin- 10.1    49 days away from kids at home
Platelets- 15
ANC- 0.4
Weight- Didn't get it today

We were so exhausted that I barely woke up in time for rounds this morning. In fact, I woke up right before they stepped in to say the doctors were doing rounds. During rounds today they decided they would take her completely off the pain medicine but they would leave her hooked up in case she needed to give herself a bump of pain med. She has not given herself a bump for a few days now. They have also decided to start her on some steroid creams to see if that will help her rash. They are still not 100% sure what the rash is from. They said it does not completely look like GVHD skin rash, but not saying it is not for sure. They really do not want to put her through a test or a biopsy if it is not necessary, so they are going to try some creams first. I went back in the room and it was 9:00 and Ariauna has school from 9:00-10:00. So I had to wake Ari up and get her to the bathroom and at the table for school. This makes not a very happy Ariauna, which makes it tough for the teacher. I have been trying hard to have her up and ready before the teacher comes in because then she is happy. But if I have to wake her up right before then she seems to have an attitude during school time. School went well and Ariauna is enjoying it more now that she is not in so much pain. After school her Physical Therapist came in to work with her. They started out playing basketball and then the therapist hid a bunch of star burst candies around the room for Ariauna to find and in between she had Ari do some exercises. Just watching Ariauna play I can see how weak she is from everything going on in her little body. She just does not have it in her to even throw the basketball. She only throws a few before it has taken everything out of her. They warned me about kids getting so weak and tired and not wanting to get out of bed, and I am definitely seeing Ariauna getting weaker. I just keep reminding myself, she had to come to Minnesota to get sick before she could get better.

Ariauna has been puking the last few days again off and on during the day and through the night. I don't think she was ready to be taken off all her anti-nausea medicines yet. So today they are starting her back on the Ativan every 6 hours, hopefully that will help her a lot.  We got a package in the mail today from the Jeppson's. Lisa made us our very own personalized Memory Game. We were both so excited and we both just sat and looked through the pieces over and over again and cried. We miss everyone at home so much! We have been enjoying playing the memory game that was here in our room when we got here, but I can guarantee this will be the new favorite game and I know this game will be something not only Ariauna and I will treasure but the rest of our family will treasure for a lifetime. Thank you so much Lisa for taking the time to make this special gift for us.

We also both got a card from my sister and her family. Mine had a gift card to Target in it and Ariauna's had a really cute heart that her cousin Camilla had made for her. Thank you, Thank you!

This afternoon we had a special visitor that came to see us, Ronai Brumett. We were introduced to Ronai through LeeAnn Mason at home in Salt Lake. Ronai lives here in Minnesota and so when LeeAnn knew we were coming here she got a hold of Ronai and asked her to check in on us. She has been sweet and kind to Ariauna and I, and has also taken us under her wing and done so much for us already. Her son is the one who drew the really cute picture of a monkey on a pig that I posted on the blog awhile back. When Ronai came today, Ariauna was getting pretty sleepy and was having a hard time even waking up to see her. She brought the most beautiful quilt that she had made just for Ariauna. She had asked me when we first got to Minnesota what Ari's favorite colors were and what else she liked other than pigs. She couldn't find any pig material.... I told her that Ari also liked monkey's and so she found some really cute material to make a gorgeous quilt. She also used the extra fleece and made Ariauna an adorable scarf to go with her coat this year. Here is a cute picture of Ronai with Ariauna and then as you can see in the next picture, Ariauna loved the quilt and snuggled right up with it and took a nap. Thanks Ronai for being so sweet to me and my angel.

 Ronai also brought with her sacks and sacks of groceries. LeeAnn Mason at home had sent a package to Ronai to have her bring to us. She had also sent some extra money and asked Ronai to pick up some extra groceries for us. She brought all sorts of yummy things.... Fruits, bagels, cream cheese, string cheese, health bars, my favorite Ben & Jerry's ice cream and the famous LEEANN'S FUDGE!!!  It was delicious and just what Ariauna and I needed. She made us chocolate fudge, cookies and cream fudge (Ari's fave) and creamsicle (my fave). I totally forgot to get a picture of all the food because when Ronai brought it I was worried about getting it all in the freezer and fridge. Thank you so much LeeAnn for thinking of me and my starving tummy. You will never know how much that meant, and one less time I had to leave my sweet angel to get myself more food. This afternoon I got a text message from my brother and I loved it so much and it touched me so much that I copied it to save forever. I want to always be able to remember it and read it over and over again, so I am adding it to the blog so that it can be a part of this journey. It brought tears to my eyes and still does each time I read it. This is from my brother Jeramie:

Nat, I am sitting in Longbeach, CA looking at the blog and I get teary eyed looking at all the pics. I usually don't get too emotional as I have been through enough shit in my life that I just know its meant to be and somehow it will all play out in my story. We all have a different story to tell with ups and downs and memories of different kinds. I know that Ari is dealing with things that most never will and honestly I am not sure that any of our kids could handle it the way she has. Every day I am amazed at her strength and her willingness to just take it day by day and fight each day. I know it has not been easy for you guys but somehow she is able to keep taking another step up the mountain she is climbing and will soon be at the summit! The puzzle is coming together and though I am not a religious person, anyone can see that someone is helping her put each piece in place and take another big step up the mountain. My mind is going 100 miles an hour trying to figure out why everything happens the way it does and why when it seems life sucks there is a picture of our sweet niece showing us all that we are a bunch of sissy's, look what she is dealing with! Sorry to ramble, just wanted to say love ya and thanks for the pics and updates, it puts everything in perspective and reminds me that it's not all a bed of roses and sometimes we need to just tuff it up and deal with it, Ari is a super hero, and you and Jerry are her defense. Love you all, Jerm.

I cried and cried when I read his text, he has such a way with his words. He can write them and make such a beautiful letter. I still cry every time I read this note. He is so right, why do I have any reason to complain..... Ariauna is dealing with so much more than me. She is a true hero, and I am telling you, being here in Minnesota and seeing and being around all these families, it is heart breaking to see how many children are diagnosed with these what we call "rare" diseases. Thank you Jeramie for that text  today, you will never know what it meant to me. (and I hope you don't mind me putting it on the blog, but this is my journal and I plan to print it out some day and want it to be a part of our journey, because that text meant the world to me today, this hour, this minute, this second.) It is exactly what I needed. I love you Bro! After I got the message I called and visited with both my brothers who drive on the road. I had a good visit with both of them and are thankful for their love, support and encouragement. I honestly do not know what I would do without the love support of my family...My Mom and Dad, Angela and Guy, Jeff and Jeni, Jeramie and Jen and Josh and Sabrina. Each and everyone of them have done sooooo much for me, Ariauna, Jerry and the kids. I know I do not thank them enough, but I want them all to know that I couldn't do it without them and I will forever be grateful for each of them. Ariauna slept for awhile this afternoon and then when she woke up we played our new memory game several times.

We also spent some time before bed doing her homework for school. She went to bed watching the Disney station. I tried to blog for awhile until I was so tired I was falling asleep.

I think I listed plenty of things in this post that I am thankful for.... Family and friends who found friends for us in Minnesota to help us in many ways. We love you all and are sending lots of love from Minnesota!