BMT day +13

Today's daily photo is brought to you by Oakley and Wyatt (some long time family friends). Luckily their mom had something to do with them writing on themselves, and hopefully they don't try it again sometime without permission. We love you both so much!!

WBC- 0.3
Hemoglobin- 9.6
Platelets- 33
ANC- Not available right now.
Weight- 52.8

I accidentally slept in at the RMH today. I remember turning my alarm off, and that is the last thing I remember. Luckily I still woke up about 9:00 and got ready as fast as I could and got to the hospital, but I had missed the rounds with the doctors. Jerry said the only thing that changed much for us was that they were going to increase her pain meds again to help with the pain she is having from the mucusitis. She is still in an unbelievable amount of pain and pretty much moans and groans all the time. She is still spitting constantly, we always have the bucket and a box of tissues next to her. She is still not talking much, she communicates with head shakes and pointing. Her face timing and skyping people has slowed way down because she can not talk. We do face time the kids at home, but I usually do the talking and Ariauna just waves at the kids. Before I got to the hospital this morning Ariauna and daddy had played a game of Phase 10. Ariauna really enjoys playing that card game and the two of them had a great time playing it together. First thing this morning we did Ariauna's shower and then the nurse came in to do her dressing change.

Ariauna does really well with her dressing changes. She has never thrown a fit about having them done. Some kids scream and yell to have them done. The first few times after she had her Hickman line put in, it was pretty painful because it was still an open wound around the site they went in and part of the change is to scrub it with alcohol. They do her Hickman line dressing change every 4 days in the hospital. Ariauna did skype a few friends this morning, but more or less just waved and to let them know she was doing okay. Here she is on her ipad skyping with some friends. Don't you just love her minion hat? (thanks to our dear friend Toni for making it).

These next two are how happy she is that I am making her put her ipad down long enough to take a picture!

This last picture she was really trying to smile. Either that or it was a FINE, I will smile so I can get back to my ipad. A little bit later on today Nicki from physical therapy came to play and brought basketball with her. Ariauna is still fighting to do therapy. I can't blame her, if I felt crappy I wouldn't want to keep getting up to play either. This BMT unit is like 10x as bad as a normal hospital visit. Think of when you have been in the hospital and how irritating it is when they come in and out constantly to do your vitals. Now times that by physical therapy, occupation therapy, doctors doing their rounds and school teachers. They all want to come in and wake you up to do things. Sometimes Ariauna will have just laid down to take a nap and they will come in to wake her up again. Ugh!

Ariauna convinced daddy to get out the play-doh and play with her. They built some cakes and some ice cream sundaes.

We actually all took a nap this afternoon until someone came in and woke Jerry and I up. Later a volunteer stopped by to see if he could come in and play, Ariauna wanted him to come in and play some games with her, but she wanted daddy to stay and play too. So the three of them played some Go Fish and Spot It. I think they all had a great time.

While they were all hanging out, Austin called from home to let us know that our front screen door had been shattered. Angela had taken Austin by the house to drop some things off about 4:00 and the door was shattered. He immediately called a few neighbors to see if they had seen anything. One of our neighbors had been over and mowed the lawn earlier that day and said it was not like that when he was there. So it had happened within the last 4 hours and right in the middle of the day. Unbelievable what kids these days will do and right in the middle of day light. I was really upset and couldn't believe it, as if we need one more thing to worry about. (Thanks to my brother for getting that fixed for us.)

My sister ended up staying at the house with Austin until the police came to fill out a police report. Which as you can imagine was not the fastest response in the world...Ugh! Thanks Sis for spending your evening at my house! The rest of the evening we just face timed with Grandma and Grandpa and Daddy and the kids at home. It was great to visit with all of them. Ariauna still did not do much talking. I did all the talking, but Ariauna wanted to see our family. Sadie lost one of her teeth today and is so excited for the tooth fairy to come. So hopefully, the tooth fairy shows up at Angela's house. I helped get Ariauna ready for bed and I headed back to the RMH a bit early, I thought I would go to bed early, but then I started blogging and that was the end of that.

Today I am so grateful for the families we have met here in Minnesota who are fighting a battle just like us. I am grateful for the love and support I get from each and every one of them. I have had numerous conversations with some dear sweet families and we have gained so many friends. I was talking to my brother Jeramie today and I was telling him that I am almost scared to come home. It is a different feeling being here with people who are going through the same things I am. Some times it is a true blessing, and sometimes it is very depressing to be around so many innocent children who have to fight for their life. These families don't know me like my friends and family at home, yet they know me in ways no one at home does. They know my fears more than anyone else because they have had those same fears, they know my joys and excitement about stupid things, like only having diarhea once, or excitement about the color it is, the joy of having a few hours without throw up, they know the pain of listening to your child cry in agony and pain because they can not even swallow because the chemo has shredded their mouth, throat and stomach to shreds, waiting for the okay to go in the hall, or a walk outside, or being fever free for more than 24 hours, or they understand me patiently waiting each morning to get the lab report, they understand me waiting for the moment to see my kids and husband come, all because they have experienced it. I do have great support at home and I can not wait to have a joyous reunion at home with each of them, but I don't think anyone can understand exactly what I am going through unless you have been through it. And right now I am surrounded by people going through similar journey's, some easier, some harder. But we understand each other in a way, that is hard to explain. I just want the other families we have met to know how grateful we are to have met you. You have all changed our life for the better. Thank you for your kind words, thank you for your encouragement, and thank you for the prayers. We too pray for each of you and wish you all the best in your continued journey.