BMT Day +16

Today's daily photo is brought to you by Ariauna's daddy. This was him leaving Minnesota on September 3rd at the United Airlines Gate E16 headed back home to Salt Lake City, Utah. We love you daddy and miss you tons already.

WBC- 0.8
Hemoglobin- 8.4
Platelets- 14
ANC- 0.5 (Yay!)
Weight- 53.24

Our night last night was a lot better. Ariauna was only up twice, which made for a much better night. They did draw her labs at 1:00 a.m. and she needed platelets, so they replaced those at about 3:00 a.m.  The doctors came around about 9:00 to do their rounds. Our Fanconi doctor went off of doing inpatient rounds yesterday, so today there was a new doctor on. Dr. Angie Smith will be the new inpatient doctor for the next two weeks. She specializes in a few different diseases, but knows enough about FA patients to do rounds. If any issues come up then she contacts the FA specialists. They decided today to leave everything they are doing the same. She seems to be tolerating her pain at the level she is at, so they will just leave things alone today and hope she has a decent day. Her ANC level was 0.5 today, yay!!  If it stays at 0.5 for two more days (total of three days in a row) then she can go out in the hall for a walk on the 4th floor unit only. She is really looking forward to taking a step out in the halls. Does not sound like a big deal, but when you have been in the same room for 23 days straight, anything is exciting. It was not long after rounds that Lauren from Occupational Therapy came in to work with Ariauna. She had promised Ariauna she would bring in the Wii the next time she came in. Lauren got it all set up and Ariauna started out by driving a dirt bike. She had a lot of fun doing that, they played that for awhile and then they switched to the Wii Fit Board. They tried doing the Hula Hoop and a few other sports on it.

Before Occupational Therapy was done, the Physical Therapist came in to work with Ariauna. Because they already had the Wii set up, they just continued with the Wii for Physical therapy too. They ended up skiing down some hills, ski jumping, and doing more hula hoop. By the time it was over, Ariauna was exhausted and took a very long nap.

After Ariauna woke up from her nap, Amy from Child Life came in and the two of them had a blast making "Glerch" or what some would call fart putty.

Dr. Wagoner came in today to visit with us, he is the other Fanconi Anemia specialist and the one that has the most knowledge and done the most cord blood transplants.  He had a medical student with him and so he wanted to show the medical student a Fanconi Anemia patient. We had a good little visit! Dr. Wagoner was amazed at how well Ariauna is doing. He said that most cord blood patients do not start grafting until day +23 and Ariauna is already grafting. We were so happy and excited and felt so good about how well Ariauna is doing. Shortly after Dr. Wagoner left the dance teachers came in, we had met them previously at the RMH. They are actually part of an organization called "Breanna's Gift". They teach dance every Friday at the RMH and then on Thursday's they come up to the hospital and either do some dance, music therapy or they offer art projects, etc. I have been blown away and amazed by this organization. The first time Ariauna went to dance at the RMH before tranplant, they gave her a brand new pair of tap shoes, donated to her by "Brianna's Gift". Today Ariauna was not feeling up to doing dance, so they did some music therapy with her and they brought with them a new tutu for Ariauna to have, she was very excited.

This afternoon was filled with lots of fun when she got a package from Aunt Jeni and Uncle Jeff. Inside she found a bunch of little presents each individually wrapped. She had a huge smile on her face!

They sent us a fun rainbow loom to make bracelets out of rubber bands, a new cute piggy (Ariauna loves piggies), the game Pass the Pigs, a fun monkey puzzle, a set of 48 little jars of fun things to add "bling" to our fingernails,a beautiful hope necklace for Ariauna in her birthstone and a cute charm bracelet with Faith, Hope, Love and the green hope ribbons on it for me. Also included in the box was a $100 gift card from everyone at the shop where they work (B&D Glass). Thank you, Thank you for the fun package.  Here is a close up picture of the beautiful jewelry they sent.

Later this afternoon Amy from Child Life came with a special gift for Ariauna. She had promised Ariauna earlier if she would take all of her medicines good today with out fighting me, she would bring her a special gift that she found in the donations. She saw it when it came in and thought of Ariauna. Ariauna was so excited when Amy brought it in, that probably everyone in the hospital could hear her. Here she is with her new surprise and then her and Amy spent the next 30 minutes playing it.

It was the Twilight Scene It game. Amy had a meeting to go to, so they only played the short version of the game. Amy promised Ariauna that in the next few days, she would come back and they could play the full version. As you can imagine, watching all of the activities of the day, Ariauna was exhausted. We both laid down and slept for two hours, it was some much needed rest on both of us. Since we took such a late nap, our evening was over in no time. I ended up getting some dinner, I called the kids at home and visited with each one of them. Ariauna watched a little bit of the Disney channel and I blogged for a bit, until I started to fall asleep.

Today I am grateful for so many things. I am so grateful for how well Ariauna is doing. I know she has a long way to go and that we are going to have tough days ahead, but I am so thankful she is doing way better than what the doctors ever expected. I am so grateful again to the unselfish mom out there who donated her umbilical cord blood so that Ariauna could get her bone marrow failure fixed and have a chance at a longer life. I am so grateful and so proud of Ariauna. I hope someday she will look back and read these blog posts and remember what a strong and brave little girl she was. She has fought this battle the best that she could do and she is doing it.... She is winning it, she is doing better than anyone expected her to do this early in the journey. I want her to know how amazed I am at her ability to always have a small on her face. Even on the darkest, sickest days she would some how, find a way to put a smile on her face. I hope she will always remember how many people at home are fighting right along with her. She is my hero and I hope and pray she will always remember what a strong girl she is. I hope she will remember down the road when challenges come her way, that she is a FIGHTER and that she can accomplish anything. I love you Ariauna!   I am also so very grateful for my little one's at home. I am really missing them again, and I apologize to those who really don't want to keep hearing it. But today I am just crushed again. I know I am in the right place, doing the right thing. But I wish so bad we could  be together as a family. I wish Jerry could just bring the machine shop with him and come over and be with us. I had a good little talk with each one of the kids tonight and it just broke my heart to think I am not there for them right now when so many things are happening. Austin is going to Jr. High now and loving every minute of it. I want to be there, I want to be there when he comes home from school each day, I want to be there to send him off to school each day and to say those simple little words "I love you buddy, have a good day at school".  I miss watching him play polo, I want to be there sitting on the side lines screaming and yelling for him to swim, to shoot, to score.... Oh, how I wish I could be cloned and be two places at the same time. I want to be there to see him earn his scout merit badges and his ranks. I wanted to be there to help with his Eagle Scout project. Never in my life would I have ever imagined not being there for my son's Eagle project. Thank you to those of you who are stepping up and doing all these things with him and for him. But I want to be there. I miss you Austin and I hope some day when you read this you will realize, how much being away from you literally kills me.  Then is my Sadie Goose, my sweet Sadie I miss you so much. I missed her birthday, I missed her 1st day of 2nd grade, I have missed school activities, her 1st night of dance, I have missed helping her pack her lunch, and walking her to school. I have missed telling her to have a good day at school, I miss doing her hair, I just miss everything about being away from them. Then there is my little Jack Jack. He is changing so much, talking to him tonight just brings me to tears. He is growing up so fast and I am missing out on it. He is my last baby, and I wanted to be there to see him do all the things he is doing. I miss him saying "I want you, I want you", I miss him playing with my belly button as he try's to settle down to go to sleep, I miss his contagious smile no matter what the day may bring, I miss going on walks with him, I miss reading him stories, I miss just watching him grow up. And now he is starting to talk sentences, and talking like crazy. Oh how I wish we could be together right now as a family.  I miss tucking each of them in at night, and whispering in their ear that I love them more than life itself. I have had some tough times as a woman and mom, but nothing compares to this. Watching my Ariauna laying in this hospital going through what she is going through and being away from my other kids is the hardest thing I have ever done. Again, I am grateful to each of you. I don't mean to make any of you feel like you are not doing a good enough job, especially my Mom and Dad. My parents are huge angels in my life right now and I am so grateful to have them and feel it an honor to call them my parents. But I just want to be there with my own kids, I want to be the one taking care of them. I also could not end this post without being so very grateful for Jerry. I know we are both going through the hardest thing of our life. Even though this is a Journey, and we as a family are going through this same journey, Jerry and I have such different roles in the journey. I could not do this without him. I am so thankful and feel it an honor to call him my Husband and my Best Friend. We have shared a lot of good times, sad times, and gosh awful times yet together we have been able to do it. I don't know how he is doing it all at home, other than he is amazing. I know there are a lot of men out there who could not do what Jerry is doing and do it with a half a smile on their face. I love you Jerry and am so grateful to have married the most amazing Husband and Father a person could ever ask for.