BMT Day +18

Today's daily photo is brought to you by Molly and Oly Underwood (sweet friends of ours) on one of their many outdoor adventures this year. What a cute picture!! Love you guys!!

WBC- 1.0               25 days in the hospital
Hemoglobin- 7.5      48 days away from home/kids
Platelets- 21
ANC- 0.5 (3rd day in a row, so she can go in the hall)
Weight-54.78

We'll our night last night did not go too much better than the night before. Ariauna was up every 1-2 hours through the whole night. She even had a little bit more hallucinating like last night, but it was only for a few minutes.  I did wake up this morning feeling a bit better. I did get more sleep than the night before with her being up and hallucinating. I got up this morning with a smile on my face, ready to forget about my meltdown yesterday and ready to conquer the world again. Amazing what even a little bit of rest can do for the soul and praying my heart out to the Lord. Ariauna did get red blood cells replaced at 4:00 a.m. I did get up to help her take her Tylenol and of course it was not down even five minutes when she threw it right back up. We might as well not even give it to her. The doctors came by to do rounds and said everything is going really well and that they are going to start cutting her pain medicine down a bit today. So they actually took her Fentenyl from 35 to 25 and then they also were taking her TPN's down from 20 hours to 16 hours. The doctors also were very excited to let us know that because today is her 3rd day in a row of her ANC being 0.5, she can go out in the halls on the BMT unit. Ariauna will be so excited to hear this, however she is still sleeping. Imagine that, because I have to be up early to hear the doctors doing rounds, she sleeps in. Isn't that how it usually goes. Ariauna ended up not waking up until 11:00 a.m., oh how I wish I could have slept in that long with her. Ugh! Ariauna woke up in a better mood today too, and telling her about going out in the halls made her very excited. Shortly after Ariauna woke up, Katie from Occupational Therapy came in to work with her. She brought hockey with her and Ariauna got right up and wanted to play. Yay!

After Katie left, they came in to give her a platelet transfusion. For any new visitors to our blog, Ariauna has Fanconi Anemia which is a very rare genetic blood disorder. And to top it off, she is allergic to blood products. So the nurse came in to pre-medicate her with Benadryl and Tylenol. This time she kept the Tylenol down, yay! Then it was time for her Sirolomis (medicine to help her not reject the transplant) and of course I had to hold her down. I feel so horrible when I have to hold her down. I wish they made that medicine taste better. It is the most important one she has to take and it tastes the worst. Ariauna took a small nap, I think the hockey game really wore her out. After her nap I again had to hold her down to take her other medicine's. I am getting so tired of being the "Mean Mom" and holding her down to take her meds. Then she was finally awake enough that we went out to take a small walk in the hall.

She was very happy to be out of her room, but it was very tiring. She only ended up going around once which was a lot for her. In fact it was probably too much. I should have probably only let her go to the end of the hall. She enjoyed being out in the hall, and of course we did not run into anyone else in the hall except the nurses. That is the funny thing about the BMT unit, the halls are completely empty all of the time. After our walk we both laid down and took a cat nap (meaning it was only a half hour). I could have slept a lot longer, but I think Ariauna had too good of a nap earlier. Today is the first day that she actually tried some food. She ate a few saltine crackers and then thought a cheesy quesadilla sounded good so we ordered one up. She took one bite and decided that was going to be a bit much on her tummy. Oh well, it was a great thought and at least she is trying to eat something.

We ended up going on another small walk in the hall later this evening. This new freedom is so exciting. After doing a walk, she is really tired and usually takes a rest. Ariauna's little best buddy Peyton that she met at the Ronald McDonald House and her nanny Rachel came by our room to visit Ariauna today. Peyton's little brother Coleson is also here on the bone marrow transplant unit. They are some of our neighbors at the RMH. It was fun to see them, we have not seen them in quite awhile. Later this evening Ariauna and I did manicures. She did my fingernails and I did her's. Aunt Jeni had sent her a box of 48 little tubes of fun things you can put on your nails. Check out my thumbs, Ariauna put little hearts on both of them. Then we put a clear coat over the top and amazingly, they even lasted a couple of weeks on there. Ariauna did her nails purple and then we put some glitter on them.

We had a great time and it took up most of our evening. While we were doing nails we started the movie Tangled and watched that until it was over and then we both got ready for bed and crashed.

Today I am grateful for the power of prayer and for a Heavenly Father that loves me enough to answer my prayers. We had a much better day today and I know it is because I took the time to stop everything that was going on in my world last night and to turn it all over to the Lord and to ask him to help me be more patient, understanding, and strength to endure this journey we are on. Thank you to everyone that continues to pray for us. I know your prayers are helping us each and every day. I guess for being here for 48 days and only having a few melt downs is pretty darn good! Love from Minnesota.