Inpatient day -1

WBC- 0.3
Hemoglobin- 9.5
Platelets- 10
ANC- no longer available until her WBC is above 0.5
Weight this morning- 53.24   Weight this evening- 53.9

We had a bit of a crazy night. We were still up every 2 hours to make her pee. Luckily that will all end today, as they will get to slow down her IV fluids at noon. At 2:00 a.m. the nurse came in to draw her labs and about a 1/2 hour later, they were in here getting her ready for a platelet transfusion. Her Platelets were at exactly the lowest they like them to get at 10. Her labs also showed her Magnesium was as low as they want it to get. So between 2:30 a.m and 5:00 a.m. they had already done an IV of magnesium and had pre-medicated her with Tylenol and Benadryl and then did her platelet transfusion. She had a busy morning and really didn't even know it. They did wake her up to make her take the Tylenol because they prefer that is given orally. We all went back to sleep after that. What a long night. I then got up about 8:00. Today is what they call her day of rest before transplant day and that is exactly what it was. Here is Ariauna sleeping in for the 1st time since we have been admitted. It was almost 9:30 a.m. before this angel decided to wake up. I am sure that had a lot to do with the dose of Benadryl at the wee hours of the morning as that always knocks her out a bit.

When Ariauna woke up she said she wanted some scrambled eggs, so I got those ordered for her. She sat up and took a great big yawn and then fussed that her mouth hurt when she yawned. I figured she was starting with the joint pain we had been warned about. Then her eggs came and as she tried to eat her mouth and throat were hurting. I knew she was probably starting with the mouth sores (Mucusitis). The nurse asked her if she wanted something for it and she said yes. They started with Tylenol (usually every child ends up needing morphine to deal with the pain from the mucusitis). Luckily the Tylenol kicked in and she was fine the rest of the day. Yay! We had a pretty quite morning. The volunteer came around and knocked on our door with a couple of packages for Ariauna. She was so excited. She absolutely loves getting packages from people at home. The first package was from the Wallin's (some wonderful friends from our old ward in Kearns). Here is what we got from them.

A really sweet card, thank you notes to help us thank so many people, a really cute little notebook, skittle chap sticks, glitter nail polishes and a gift card to Walmart. Thank you, Thank you to the Wallin family, we absolutely loved the package.  Ariauna also got a very fun package from the Darrington's who are in our current ward. It was a really fun game using the primary songs. What a clever idea!!  Sister Darrington is really good with things like this. And it was fun and kept Ariauna busy for awhile. She liked it so much she wanted to share it on the blog and see if those who read our blog can "Name that song". So here you go!!

There is a note on the answer sheet that says there are actually some of the items that could have a few different songs that it could go with. Try it out and see how you do before you move down to read the answer list. Ariauna had really fun with this activity. Thank you Darrington's for a fun package, she loved it.
Here are the answers:

I went to the toy closet today and found us a new game to play called Rummikub, so we borrowed it. We played it for awhile this morning. We only played it once and it took us about an hour. We had a good time playing it, it was good to have something different to play for a change.

Right before lunch we got a special visit from Amy (the child life specialist). She brought in her bone today and we had a great discussion about Ariauna's bones and the bone marrow inside of them. Here is Ariauna digging out the red blood cells, white blood cells and the platelets out of the bone.

We had a great discussion with her about bone marrow, why it is important, and why Ariauna's blood factory is not working right. She told Ariauna all about the cells and that red blood cells are the one's that carry oxygen to our heart and helps us to have energy, the white cells are the one's that help us fight infection and the platelets are the one's that help our bodies clot blood if we get injured or hurt and start to bleed. Amy is great and has a way of teaching children about these important procedures she is going to have done. To finish off our visit with Amy, Ariauna got to make blood soup. Here she is mixing it all together.

The plasma was corn syrup, the red blood cells were red hot candies, the white cells were hard marshmallows and the platelets were little pieces of rice. We made two bags of blood! The first bag was to represent Ariauna's current blood and what it looks like, notice there is not many cells in it at all. And the second bag was to represent what her new cells will look like, notice how many more cells are in it. We had a great time with Amy and I am so grateful for all she does to make things easier for Ariauna and the other children in the hospital. Here is her blood soup she made, I think it is a great way to show kids the difference and why Ariauna needs new cells. Because her old blood definitely doesn't have what a normal person has and needs.

 Ariauna ordered lunch which was fettuccine alfredo and she actually ate almost the whole thing and it looked like an adult serving so she did really well. This afternoon Amy came back in and painted Ariauna's fingernails. I should have gotten a picture, but forgot. Amy did her fingernails and then Amy left to go play with another child. I painted Ariauna's toe nails and then Ari painted my nails. It was a fun afternoon. Ariauna watched a few movies, we did her exercises, I put starburst all over the floor and made her go back and forth across the room to get them and then made her squat to pick them up. Ariauna was actually doing really well this afternoon so I decided I would run again to the RMH to do a few chores. With her doing all of the chemo we have had a lot of laundry piling up. I know she could start getting sick again, so decided while she was having a good night I would run again.  I helped Ari order her dinner, which was fettuccine again. I think she has found a new favorite meal. I left and went to the RMH house, started a load of laundry. Then I went down and ate dinner with the other families, took my ziploc container and got some left overs for dinner tomorrow night. After dinner, I ran up and put the clothes in the dryer. I quickly walked to the local CVS Pharmacy to get a few groceries. I needed more bread, bagels, yogurts, etc. A few things for breakfast and lunches so I don't have to buy so much hospital food. While I was gone I had Austin and Grandma and Grandpa set up to face time with Ari so she didn't get lonely or bored. I texted Ari to see if she wanted me to bring her a shake from Dairy Queen back. We fell in love with their Smores shake they have right now. I stopped and got that on my walk back to the RMH. Once I got back, I quickly folded my laundry so I could catch the last shuttle of the night back to the hospital. I got all of my stuff put away, popped some popcorn for Ari and then she had plans to face time our dear friends and neighbors, the Kings so they could all play garbage (a card game) together. Here is Ari playing garbage with them via Face Time.

We had a great day today and it was a rainbow day from the beginning to the end. We love rainbow days! Tomorrow is the big day, the one we have all been waiting for. It seems like we have been waiting for this day forever. (I know compared to some families our wait was nothing and I am grateful for that, but it still is never fast enough.) I sent a message out on Face book today asking those who love Ariauna and our family to join us in fasting and prayer tomorrow. We are going to need all the prayers and blessings we can get this next little while.

Today I am grateful for:  My kids at home, they bring a joy to me that is irreplaceable. I am grateful for the ipads our family has to stay connected. I can not imagine not being able to see them each day. I am grateful to those who are helping keep our families life in Utah easier (you all know who you are). I am grateful to other families here at the hospital and at the RMH that are going through similar journey's that can relate with me and who know and feel my pain, my heartaches and my joys. I am grateful for my Lord and Savior Jesus Christ and for their help in me making it through a day at a time. I can feel their love around me everyday, in every step I make, in every decision I make. I am grateful for all the prayers that are being said in our family and Ariauna's behalf. I can feel them, and I know that God hears and answers prayers. I have seen our prayers being answered in so many ways and for this I am grateful.