Outpatient Day 2.....

Our day started this morning at 6:30 a.m. so we could get up and get ready, eat breakfast and catch the shuttle to the hospital for our 1st appointment at 8:00. Our first appointment today was in the Patient Learning Center and it was teaching us about the Hickman line that Ariauna will be getting placed on Friday. They also did some hands on training to show us how to care for the line and how to change the claves and the dressing. The caring for and dressing changes are about the same as the PICC line we have been used to. Here Ariauna and I are with "Chester" the chest practicing cleaning the lines and flushing them.

After this test we had to go over to the pulmonary function testing where we spent an hour and a half doing breathing tests. She had numerous breathing tests they did on her. Some with a breathing machine, some she had to be in this big enclosed thing and then they gave her an inhaler to see if that helped or made things worse. All of this was to get a baseline on her pulmonary functions. Here she is having some of those tests done.

Then we had like a three hour break today. So we went back to the hotel. Ariauna fixed me lunch, yay! And then we laid down for an hour nap.

 Then we went back to the hospital and went out to the new playground they built especially for patients and families. Ariauna had fun playing and being out in the fresh air for a bit. Also, in case you have not noticed Ariauna and "Kit" (her American Girl doll) have become the best of friends. She goes everywhere we go, she has feelings (like if I accidentally put something on her foot), she has her own bed and she gets dressed and ready for bed each day. If it makes Ariauna happy and it gives her something to focus on, I am all for it. It has given her someone to go on this journey with her besides Mom.

I love to see this angel of mine continuing to smile and enjoying life. We have met 3 other Fanconi Anemia families here and out of all of them Ariauna seems to be going in to this transplant the healthiest. I hope that is a good thing and a good factor for us. After our break we headed over to the building across the street for her Neuropsych Testing. We got her all registered in and then it took me an hour to fill out all of their paperwork. This whole thing seemed totally inappropriate for Ariauna. All of the paperwork asked about how she does in school, how she does at home, how she does socially, how she does with behavior, how well she gets along with others. Once my hour of paperwork (stupid questions) were done they called us back. The nurse asked why we were there, and what I hoped to get out of this appointment. I was honest and told her I had no idea why we were there and that I was only there because they put it on my schedule. It seemed as if this appointment was for children that had more behavioral issues and if any of you know Ariauna, that definitely is not the case. We spent 3 hours with them and even though I thought it was all stupid, Ariauna had fun because they did "school work". She misses school a lot. I guess this is a new thing they have started doing for Fanconi Anemia kids because some of them are really behind in school and some do have behavioral issues. We didn't get any pictures of this visit because it is all behind closed doors. They talk to me, then they talk to Ari, then they will do more testing tomorrow and then they will call me back in and give me the feedback. After this appointment we took the shuttle back to the hotel. It was getting close to dinner time and yesterday when we were out walking we happen to walk in to a CVC Pharmacy/store. Ariauna noticed they had T.V. dinners.  Well tonight we agreed that she could pick what she wanted for dinner. So you guessed it, she wanted a T.V. dinner. So we headed out for a walk, while we were out we saw the college football stadium.

Then we found the little store so she could get a T.V. dinner and then we walked down a block or two and I went and got a burrito from Chipotle. Here we are back at the hotel,  having our fancy dinner.

 We also got our first package of the love train tonight from Daryl and Debbie Kirby and family. Ariauna was so excited. Here she is with the package an opening it with anticipation and excitement.

It was a very fun package and we were thrilled to get it. In case you can not tell what everything is, there is a beautiful picture that says "I can do hard things" (which we have sitting by her  bed and will make sure it follows us along our journey), a mini notebook, mini markers, a box of thank you cards, a dice game called Noah's arkle (it is a lot like Farkle), candy and gum. And let me tell you, we broke right in to the candy within minutes of getting them. I think we were having a chocolate withdrawal. Thank you Kirby's for a fun package! Later that night, Ariauna was skyping with her friend Meaghan and their friend Trinity happen to be there too. So they all chatted on skype. The next thing I know, I look over and there is Ariauna all set up at the table playing garbage, and her friends at home in SLC, also were set up playing a game of garbage. So I guess you can even play garbage against each other miles and miles away. I just love these little girls and appreciate so much all of Ariauna's little friends that have helped her pass the time and make her life more fun.

This last picture is a horrible picture of me, and I normally wouldn't post pictures of me like this, however I also want people to see me when I am down and sad and crappy. Because this is a part of our journey, and this journey is not easy. This was after I had face timed Jerry and the kids at home and my parents. I sat and had a good cry. Oh, how I miss them and it has only been two days.

Ariauna and I said our bedtime prayers and went to bed, I pretty much cried myself to sleep.