BMT Day +24

Today's daily photo is brought to you by the Whiting girls. Poor Shaylee being taped to the fence, all though her mom says she was laughing just as much as her sisters were. Thank you Whitings for a fun picture, it definitely gave us a good laugh!

WBC- 1.7              31 days in the hospital     
Hemoglobin- 8.7     53 days away from home/kids
Platelets- 9
ANC- 0.9
Weight- 53.24

Our morning today started at 3:00 a.m. when the nurses came in to give Ariauna platelets. We woke Ariauna up to give her some Tylenol (they do not like to give the Tylenol through IV) and then they dosed her with Benadryl. For those of you who are new to the blog, Ariauna is allergic to blood products so she has to be pre-medicated every time she has an infusion. We did go back to sleep for a bit after they started her platelets. At about 8:30 the doctors came by to do rounds. They gave us the best news we have had in a long time. They did a blood/lab test and got the results back that as of today.....Ariauna is 100% DONOR CELLS......Yay!!!  That is the best news ever.... I asked the doctors how often that changes, and if her little body could still in time grow her old cells and the answer is yes, it could. However, they very rarely see that happen in Fanconi Anemia kids. I am so very grateful today! Ariauna also did not run a fever last night, so that is good news too. Ariauna did really well with her school tutor today. She was up and ready and I think even enjoyed it! It was not long after school that they came in to do physical therapy with her. I am not sure why Nikki was not here today, so it was a different therapist. They played Hyperdash for awhile and then they went out on a trike ride. 

The therapist today decided the trike Ariauna has been riding is a bit too small for her, so she took it and switched it for one that looks more like a big wheel.

Ariauna liked the new big wheel trike much better. She had a great time on it out in the hall. Ariauna finally felt good enough to open her package from the Mason's. Ronai brought it with her when she brought the beautiful quilt the other day, but Ariauna was not feeling really well and was running a fever again so Ariauna never opened it. Ariauna was so excited and loved the package. LeeAnn sent us some homemade fudge, yummy :-). Ariauna's favorite is the cookies and cream and my favorite is the creamcicle. They also sent a cute puzzle Ariauna could design, some fun scented markers, an adorable denim hat and lots of cute pictures colored by Sarah, Maeghan and Sam. Thanks again Mason's for the fun package, we loved it!

One of our new dear friends from Minnesota called me a few days ago and said she really wanted to come and kidnap me for a few hours today. I hesitated as I do not like to leave Ariauna at all. I know it would do me some good to get away, but also worry about if something happened to Ariauna while I was gone, or heavens to bid, if something happened to me while I was out and about. I talked to Ariauna about it and she said if I could get one of the volunteers to come in and sit with her then she would be fine with it. So I told our friend Lisa I would have to wait until early this morning to see if I could go out and sign up for a volunteer and if there was one available this afternoon. I went out first thing to see what the availability was today (they put out a sign up sheet every morning at the main desk on the 4th floor and you have to wait until that morning to sign up). Luckily there was a volunteer available and it happened to be Beth, who Ariauna absolutely loves.  Ariauna was excited and as much as I feel guilty leaving her, I know it will do her and I both good to have a little bit of time away from each other.  So Beth came to sit with Ariauna at 1:00 and Lisa picked me up shortly after that. She decided to take me to Lake Calhoun to walk around, that way we could walk, get some fresh air and just visit about everything. It was an absolutely gorgeous day here in Minnesota and a perfect day for a long walk. So we ventured out and got to the lake. We parked the car and headed out for our walk. We decided to walk the whole lake which happens to be about 3 miles. To say the least about a year ago, this walk would have been a walk in the park....Since then....well.....I am a bit more out of shape, and have put on a few extra pounds sitting around the RMH and the hospital and eating homemade snacks that volunteers at the RMH make as well as our family and friends have shipped us. To say the least, It felt great at the moment, but I am sure my legs and my feet will feel it tomorrow.  Ariauna will get a good laugh about it. I can tell her I definitely got my physical therapy today! Lisa took this picture of me at Lake Calhoun at the beginning of our adventure. The other pictures are one's that I took along the path. I love how you can see downtown Minneapolis in the background.

 It took us just over an hour to walk around the entire lake. It was beautiful and it was so good to be out in the fresh air and to have some adult conversation. I am very appreciative to her for taking me away for just a few hours, enough for me to get re-energized. On the way back we stopped at the RMH and took a load of stuff that we no longer need at the hospital. I picked up one of the big suitcases so that as it gets closer to Ariauna being able to go back to the RMH, I can start taking a few loads back and forth. Since we take the shuttle back and forth it is going to take several trips to get everything back to our room. Lisa brought the Chinese cabbage salad and some chocolate zucchini bread to have for lunch so we ate that quickly and then headed back to the hospital. Here is a photo of us with Ariauna, of course Ariauna slept through Lisa's whole visit. In fact, the volunteer Beth said they played a few games right at first and then Ari feel asleep and pretty much slept the rest of the time we were gone.

When Ariauna did wake up, she was excited to find the balloon that Lisa had left for her.

Later on this evening Ariauna rode her trike with me to the kitchen. I made myself a noodle dinner and she wanted some top ramen. This is the first time in a long time she has asked for anything to eat so I was going to jump right on it. Here she is with her bowl of top ramen! She only ended up eating about five bites, but that was five more bites than any other day.

We also ended up popping some popcorn and had Ariauna all tucked in with a warm blanket ready for bed at 8:45. She watched the Disney channel while I blogged for a bit. 

Today I am so grateful to each and everyone who has been praying for Ariauna and our family. I know that my Heavenly Father has heard the prayers being said in our behalf and I know our prayers are being answered. I know we still have a long road ahead of us and that this is still the beginning of our journey, but today as we were given the news that Ariauna's little body is 100% donor cells, I am wiping away tears of joy and gratitude. I am so grateful to a Heavenly Father who hears and answers prayers. I know we are not on this journey alone. I know without a shadow of a doubt that we have a Heavenly Father and Savior Jesus Christ who is helping us through this. We are so very grateful that Ariauna is engrafting and that as of now she is 100% donor cells. Thank you to everyone who is praying for her and her little body to grow those little cells and the right cells.  I am also very thankful today for my Minnesota friend Lisa, for taking time out of her day to sweep me away. It was a very much needed time away from the hospital and the fresh air and beautiful scenery was just what I needed. I am also very grateful for dear and sweet Care Partner volunteers who spend time at the hospital helping children like mine. I can not even explain how mentally, physically, and emotionally drained I am, and to know there are good, sweet volunteers who will step in to give me a small break is amazing. Am I happy where I am at, NO..... But am I grateful, YES!!!  As much as we would love to be home with our family and friends, we have so much to be grateful for...  And today is just living proof that we have so much to be THANKFUL for!  Much love from Minnesota!