BMT day +12

Today's photo is brought to you by Braden (a friend of our family). He is growing up so much and this is one of the first few days of him going to 1st grade. Thank you Braden for the cute picture!

WBC- 0.3
Hemoglobin- 9.2
Platelets- 23
ANC- Not available yet
Weight- 52.8

Jerry had a long night with Ariauna again. She was up through the night in quite a bit of pain from the mucusitis. She pretty much can not talk at all right now. Her mouth is a little bit swollen and if you look inside, it is full of white mouth sores. She can not even talk to Jerry and I right now because it hurts so bad. She is constantly spitting in her puke bucket. It breaks my heart to see what her mouth looks like and then know and realize that her throat all the way down to her stomach is doing the same thing. She is in a lot of pain, she spends most nights moaning and groaning and spitting all the time. Her mouth hurts so bad that she collects all of the saliva in her mouth and instead of swallowing it, she spits it out. The labs they drew at 1:00 a.m. this morning showed her platelets were really low, so at 3:00 a.m. they came in and pre-medicated her with Benadryl and Tylenol and then gave her a bag of platelets. Rounds went okay today, they said Ariauna is doing really well and for the amount of mucusitis she has, she is doing fabulous. The only change they made was that they increased her pain medication again to help with the mucusitis. Physical therapy came in at 11:00 today and played zoom ball again and then they also played hyperdash. Ariauna even made daddy give it a try, but they put it on the hardest level for daddy. It was kind of funny to watch, especially because daddy did not even know what to expect with the game. Hyperdash is a game with little discs they put all over the floor and then you turn it on and on the easy level it just tells you what call to touch and you have to connect the main paddle with that color of disc. But the harder the level gets, they add math into it, colors and double and triple hits. 

Ariauna continued to be in pain most of the morning so at 1:00 they increased her pain bumps so that when she pushes her button it will give her a bit more pain med in hopes to relieve her pain. The docs say she definitely got a bad case of mucusitis. Poor girl. When Jerry came he brought some school books from her teacher at home so that the tutor she has here can work with her on similar things they are doing at home. Inside the backpack was her "Monkey in my Chair" bag full of cards and pictures from the kids in her school class at home. Ariauna has not felt good and has been sleeping a lot so today is the first time she has wanted to do much of anything. So we got out the bag and she looked through each of the pictures. She enjoyed reading each one and they all brought a smile to her face. You can see that she fell asleep still holding on to the bag of notes. Later that day I posted all her notes on the door. (The rag by her mouth is to catch all the drool that comes out, because she will not swallow because it hurts too much.)

This afternoon just after Ariauna woke up our Friends Amy and Allison came to visit us. They are part of the sweet family that has taken us under their wing, taken us to church a few times, her husband has given Ariauna a blessing, and they have visited us numerous times now. Last time they came to visit Amy brought Melanie. She thought it would be better to bring the girls one at a time as not to overwhelm Ariauna. We played Go Fish a few times with Allison and then Ariauna opened the other 3 presents from the Ronald McDonald House.

Ariauna really was not up to visitors, so they did not stay long. After they left Ariauna spent a lot of the afternoon sleeping. We have been keeping the cooling blanket machine running under her, putting cool rags on her head and trying to keep ice packs in with her to help keep her fever down. I laid down with her and took a rest, and Jerry caught it on camera.

Later tonight we skyped Angela's computer at home so we could see the other kids. The kids have been having a blast at home with Uncle Guy, Aunt Angela and the kids! The younger kids have been playing and just hanging out and Austin went with the guys over the weekend to cut firewood and he took my four wheeler to go four wheeling. It was good to see the kids and hear their voices and to know they are having fun even with Mom and Dad both being gone. This evening we were trying to get Ariauna out of bed to do something. So we ended up on the matt on her floor playing "Spot It" and "Rummikub". We had a great time spending time with the three of us.

 Even though she did not feel good, she tried to get up and tried to smile and be happy about it. That is what I love about this girl, she keeps fighting no matter what! Ariauna again wanted her daddy to stay the night with her. Poor Jerry, is not getting much sleep at all, but he knows she wants to spend every minute with him that she can. When Jerry goes home, he will just crash. It is too bad, Jerry is having to use all of his vacation this year for something that is definitely not what any of us think is a vacation. I helped Ariauna get all settled in for the night and then because it was late, the shuttle was no longer running so one of the hospital security guards drove me back to the RMH.

Today I am grateful for the physical and occupational therapists that come in to work with Ariauna. Their job is not the easiest thing, as Ariauna has had a few times that she has fought them to get out of bed, because she does not feel good. There have been days she has been kicking and screaming at them because she is in pain, does not feel good and certainly has no desire to get up and "play" with them. But their job is to get those kids up and walking to make sure they stay strong and with very patient and calming attitudes they do just that. They are special people and have a special place in their heart for these kids or I am sure they would not be doing what they do. As a mom, I am so grateful to them. I can see Ariauna getting weaker and weaker as she tries to get up and go potty. I have been told by numerous nurses and staff how well Ariauna is doing and that a lot of kids at this point in transplant are just doing their bathroom duty in their beds. I am grateful for Ariauna's desire and willingness to fight this and to keep putting her next foot forward and trying with all her might to do her very best!