Blood counts are very low again....

We got a phone call late friday afternoon that Ariauna's blood counts are very low again. I was outside when Primary Children's called so they left a message and said that her hematocrits are 8.9. A week ago they were 31.2 so they dropped a lot in one week's time. Yikes!  This is what scares me....People think she looks so good and on the outside she does, but her poor little body on the inside is not doing so good. Last week they thought maybe she would be okay for a couple more weeks, but obviously that is not the case. Anyway, they want us to call first thing Monday morning and talk to the team to see when they want us to come up for yet another red blood cell transfusion. So I am sure it will be happening very soon. Normally anything under 20 is considered needing a transfusion. But they told us they would let her get in to the single digit numbers because they don't want to do too many transfusions before transplant. She is definitely in to the single digits. So I am pretty sure it will not be much longer. We have had a busy week going back and forth to special ed and speech classes. She had her tutor come again on Monday night and she really enjoys doing school work with her. I worked quite a bit from home this week. Thursday our home health care nurse Danika was out of town so we had a different guy come, but he did a great job drawing her CBC blood draw and changing her PICC line dressing. He even gave us a great idea (leave it to a male nurse to tell us this) about cutting the ends of a pair of socks to put over her PICC line. Why didn't we think of that. Her dressing on her PICC line was really coming up this week, I started getting nervous if it would be okay or if we would have to call home health to come out early. Luckily, it all worked out. Anyway, we had been using these little elastic style things from the hospital, but they would get all stretched out within a 1/2 hour of putting them on. The socks have been the best thing ever!

 

 Thursday we went to lunch with grandma and grandpa. Grandma goes back to work on Monday after being off work for awhile with her feet, so we decided to have one last date before then. Friday Ariauna had a very busy, but fun day. She spent the morning having a play date at the Brinkerhoff's and then spent a chunk of the afternoon having a play date with her friend Emily W., they rode bikes for a big part of their play date. Then we spent some time down celebrating Karen's (our friend/neighbor) college graduation. The girls spent time trying to sale flip flops. They started their own "business" called Flippy Floppys to earn money for our family to come visit while we are in MN having the bone marrow transplant done. This was all their own idea and I am proud of them for wanting to earn money to help Ariauna. They sold several pairs and made about $46.00 just that one day. They are making the flip flops by tying water balloons, or different colors of tulle on them. Everyone who see's them, loves them.

 

 About 7:30 we went back down to Karen's house for the part Ari had been waiting for all week......Smore's over the campfire. Thanks King's for a fun night, that might just be the only campfire we get this year!

 

Saturday I took Austin and Sadie to Primary Children's hospital to the SIBS class (Super Important Brothers and Sisters). I had signed them up for it while we were staying up there. They had a lot of fun. Ariauna and Jaxon spent the morning with grandma and grandpa and our family from Colorado. They all headed off to the zoo. When I signed Sadie and Austin in at Primary's they said I could not stay with Sadie. I was a bit nervous for her, she is kind of funny doing things with strangers. But she stayed and had a great time. So I headed over to the zoo for about 3 hours to spend time with my other kiddos. Jaxon really enjoyed the animals, even more this time then last time. Ariauna enjoyed every minute of hanging out with her cousin Mekenzie.

 

 After the zoo we headed home for a rest before going and having family pictures taken. We had Tammy Rickett take some family pictures for us today. I am so grateful to her for squeezing us in so quickly to get some new good photos of our family before we head off for transplant. She sent me one last night of Ariauna that she had retouched and gotten rid of the feeding tube sticking out her nose. I would have to say it is a beautiful picture of Ariauna. Here is a sneak peek, more family photos and pictures of Ari to come later.

She took a ton of pictures of all of us together, some of the kids together, some of the all the boys, some of all the girls, and she focused a lot on taking a bunch of Ariauna with her long beautiful hair before she loses it all, and some of each of us with Ariauna. We even snuck in a few shots of Jaxon for his 2nd birthday. I will forever be grateful to Tammy for spending all the extra time she did with us and capturing these moments for us. There was numerous times I about went to tears watching my family spend time together. Watching Ariauna interact with each one of her siblings. These are the moments I will treasure in my heart for the rest of my life and these are the moments I will look back on when we are a long ways from home and missing each other so much. Ariauna is wearing down and you can tell her blood counts are low. She is more tired and wanting to lay around and take it easy. She is going to stay home from church today and lay around and take it easy. I guess we will find out more tomorrow. I hope if they are going to do a blood transfusion that they can work it in while we are already up there tomorrow having our appt with her surgeon Dr. Soukup. There is so much to do and not enough time in the day. I have a feeling our time here in Salt Lake is running low and we have play dates, doctor appts, a room to build, and a zillion other things to get done. I will try to post again soon.