Another busy week, but we continue to be blessed....

I can not seem to get everything done that needs to be done these days. I have a zillion things I need and want to get done and when bed time hits I wonder what the heck I did all day. Ugh! We'll this last week was just as crazy. I started the week out by trying to get a car rental booked, searching for a hotel that doesn't cost $280.00 a night to stay in, ordering medical supplies for Ari's PICC line and her feeding tube so we have enough to take on our trip. Tuesday night me,the girls, Jack Jack and our friend Gabi planted some flowers in the front flower bed. (I know crazy that I have a million other things to do and we are out planting flowers, but we need some beauty to look at, and since the inside of my house looks like a tornado at least we can see beauty outside). Then we went on a late night walk with our neighbor Karen.

 Wednesday I had to get some dental work done, yuck! I had a few things I needed done and decided it was best to get it done before I leave for months. I still have lots of doctors appts to make for me and the kids before I leave. Ariauna's home health nurse came out today to change her PICC line dressing and to draw her labs. They did it a day early this week so we can get the results back and if needed do a blood transfusion before we go to MN. Wednesday night I was up bathing the kids to get ready for bed when the doorbell rang. I went downstairs and opened the door to find a bunch of beautiful young woman and leaders standing on my front steps with this.

 Seven freezer meals and a couple of huge bags of cookie dough balls to freeze. I almost started to cry when I opened the door and saw them. I couldn't believe it, and was so touched that they would do this for our family. I tried to explain to the girls how grateful I was. I know the leaders understand how grateful I am, but I hope someday the girls will look at that experience of making those meals for our family and be able to comprehend what a huge service that was for our family. Jerry will be so grateful to have those meals while I am gone. Thank you, Thank you to the young woman and their leaders for such a wonderful gift. Thursday morning I got a phone call from Primary Children's Hospital that Ariauna's hemaglobin level came back at 8.1, so it only dropped .1 because it was 8.2 last week. Yay! It did not drop too much. So the Hematologist is okay with just watching her. She is not low enough that they have to transfuse. So we will watch her during the weekend and if she gets symptomatic we can run up and have a transfusion, otherwise we will go to MN and if she has issues there, they can do a transfusion. Otherwise we will just have her labs drawn again next Thursday. I was so excited, I know they want to do the least amount of transfusions as they have to before the transplant so I was so grateful that her levels did not drop too much. In the afternoon, we had dentist appts for all the kids. No cavities for anyone, yeah!!  Ariauna was not allowed to have anything done on her teeth, except x-rays and an exam for the doctor to tell us what things she needs to have done. Now we will take that information with us to the appt in Minnesota and the bone marrow doctors will decide if that is something that has to be done right now or if it can wait until after her transplant. The concern right now is her low blood levels. If she was to start bleeding, she could bleed and bleed and they would have a hard time getting it to stop. They also worry about infection because if she gets an infection she goes right back to the hospital. The only thing she needs to have done is a couple of baby teeth pulled on the bottom that are not wanting to come out. I guess we will see what the bone marrow doctors say about it. Here is Ariauna playing like she is the dentist, while we waited for our turn.

 Thursday night the girls spent some time down at Karen's house making lemon cookies with her. She told them they would make some cookies to take to their friends. So they made some cookies and then she took them to deliver them. I spent Thursday evening ordering some pretty cool things to sale at the carnival. Not going to tell you what they are, but some pretty fun and exciting things to help support Ariauna in her next journey. It was a tough thing to do and something I never imagined I would be doing. I sat at the computer for hours going through pictures of my beautiful girl, trying to pick one of my favorites to use for these items. I just sat at the computer and cried and cried and cried. I was up until about 2:00 a.m. reminiscing and trying to get this order placed so they will be back in time for the carnival. I still can not believe I am where I am at and still don't understand how I am making it through each and every day. The time is getting closer and it is becoming more and more real. Monday will be here before we know it and even though this trip she will be feeling good and hopefully we can do something fun while we are in Minnesota, it still makes it seem more real, and terrifying for what is coming. Friday we got a beautiful email from our friend and Child Life specialist at Primary Children's Medical Center named Holly. It was great to hear from her and she continues to bless our lives. I find it very amazing that even though Ariauna is no longer a patient there, she still is doing everything in her power to make this next journey for Ariauna as easy as possible on her. She sent us a link to a very fun, and exciting movie that was made just for Ariauna from the Child Life Specialists in Minnesota. I will try to post it as a separate post in a minute. We watched the video and I continued to cry and cry about how amazing these people are. They didn't have to make this video for Ariauna, but they did it because it will help her. Thank you to Primary Children's for continuing to take care of us and for the Amplatz Children's hospital in Minnesota for helping Ariauna to feel more loved and cared for before she even gets there. We are already feeling the love and kindness and we have not even met you yet! Today was Sadie's summer birthday at school so we went and got lunch and took it to her. I didn't want to take Ariauna into the lunchroom with a 100 kids and germs so we were planning to eat out under a tree, but then it was raining. So luckily the school offered us an empty office. We enjoyed lunch with Sadie (I tried to make it a big deal since I most likely won't be here for her real birthday in August) and then sent her back to class. When school got out Ariauna went to Meaghan's house for a play date. They planned it like a week ago. They had fun playing like they were working on the computers for a job, baking peanut butter cookies, went to the park until it rained again, and took the baby dolls for a walk. Ariauna had a great time and spent all afternoon and half the evening over there. Ariauna and Meaghan have also gotten to be really good friends. Thanks Mason's for spending so much time with Ariauna today. (notice the picture of Ariauna's hands, they are covered in sugar)

 

 

Then last night we had the Brinkerhoff's over for a fun night of kid games and ice cream sundaes. We had lots of fun playing with them too. (no pictures though, ugh!)  Ariauna continued to go to the school every afternoon this week for special ed and speech, her tutor came twice this week because the tutor was out of town last week, Ariauna continues to try to squeeze everything in to one day that she can. She doesn't stop, she is going, going, going like the energizer bunny (without any blood). The rest of our weekend is going to be pretty boring. I have 11 more surveys to do for work before I leave town so I will be working today until they are done. Then we have packing to do to get ready to go out of town and cleaning the house so grandma and grandpa don't see the pig pen we live in while they come to stay with the other kids. We continue to have people donating things to us for the silent auction at the carnival, people giving us checks to put in Ariauna's account for her bone marrow transplant, people and business' donating for the carnival and our carnival crew still putting lots of time and effort into planning a wonderful event. We continue to be so grateful for everything that everyone is doing. Thanks for everything! I will try to post again soon!