Staying in SLC a little bit longer......

I just wanted to update everyone on what has been happening the last few days. We got a phone call yesterday from the University of Minnesota Hospital and unfortunately when they sent for more information on the cord donor they really wanted to use for Ariauna it was still missing vital information. So basically there was some diseases that were not labeled on the cord blood as being tested. So the bone marrow doctors are not comfortable using that donor. I am grateful they are being so cautious as to what they will and won't use on her. So the bad news is, that means we are not leaving in a week like we thought. Now we are in limbo again.  So we will be hanging out in SLC a little bit longer. Which is good for my house and my other kids, but not so good on the fact that we want to be back home for Christmas. So the plan for right now is to test the three live donors that are the next best choice. Basically the cord blood donor they wanted to use had preliminary results of a 5 out of 6 match which was the best option at the time. Next down from that would be these three live donors that the preliminary results show as a 7 out of 8 match. So right now they are in the process of contacting those three live donors and finding out if they are still capable of donating (meaning depending on when they were put on the list, they may have had some medical issues come up on their own self, or they just may not be able to donate at this time in their life). If any of those three are still capable of donating then they will send them in for lab work and if that all comes back fine then they will do full work up on them and then schedule for them to donate. That can take up to about five weeks. If none of those are going to be options then they will go down to the next best thing which is another umbilical cord donor that preliminary results are a 4 out of 6 match. They have definitely used 4 out of 6 matches, but would prefer the best of choices if at all possible. If they end up using the cord blood it could be only a couple of weeks. So right now the soonest we would go is June 17th and it could be more up to the first week of July. So we will just keep praying our hearts out that one of these live donors will work out for Ariauna. Please keep your thoughts and prayers with us and especially on the search for Ariauna. I should know more information next week from the University of MN on if those three live donors are even going to be options. I will post as soon as I know more information.

Ariauna, Jaxon and I headed up to Primary Children's hospital this morning. The child life specialist up there was putting together a travel kit for Ariauna to take to MN, they have been so good to us and even now knowing we are going to another hospital out of state, they still continue to take good care of us. While we were there, we visited with all of our favorite nurses on the 3rd floor, went to the 2nd floor and visited with the general surgery team and ended our visit with the hematology/oncology department. Ariauna wanted to share with everyone her Fanconi Anemia- Go, Fight, Win rubber bracelets and button pins with her picture on them. Everyone she gave one to was so grateful and was so happy to see Ariauna. We do miss all of our friends we made during our five week stay there. While we were visiting the hematology and oncology department I saw Dr. Eldridge and asked her if she had seen Ariauna's CBC (complete blood count) blood draw results from her labs yesterday and she said no, but they looked them up for us. Her hemoglobin was 7.1 and last week it was 7.4 so it did drop some, but not a ton.  I was so happy it was still above 7. Yay! Now for those of you who may not know what this means, let me update you that her blood counts are very low and will continue to drop until she gets a bone marrow transplant. She has already had 3 red blood cell transfusions and one platelet replacement. On a normal healthy person anything under 20 they would transfuse. But with someone who needs a bone marrow transplant they don't want to do anymore transfusions than they have to. The doctors at Primary's said they would let Ariauna get to below 7 unless she was symptomatic before than, but the doctors at Univ of MN said they will let her get down to a 6 1/2 as long as she is not symptomatic. However, I did talk to Univ of MN yesterday when they called and if she is below 7 they will probably transfuse her before she gets on a plane due to the lack of oxygen on a plane. So we are still just holding off on the blood transfusion as long as we can. Here is Ariauna getting her blood drawn yesterday and having her PICC line dressing changed with her home health care nurse Danika.

A quick update on the rest of our week. We spent all of last weekend and Memorial day Monday cleaning in the basement. Getting ready to build a room in the basement so Austin can move down and so we can separate the girls so Ariauna can have her own room when we get home from transplant. We were told she should have her own room when she comes home so she can be confined to her own area with less germs. Luckily when we were told to do this we had just got our tax return back so even though that was not the plan this year, that is what we are doing. Tuesday I took Austin and Sadie to the doctor because they are both sick and complaining about soar throats and that is all we need is strep going around our house, luckily it is just colds. I had a doctor appointment for me on Wednesday. It is crazy trying to get everyone caught up on doctor visits and dentist visits before we leave. Wednesday afternoon/evening, Ariauna had another play date with her friend Maddie, here are a few pictures of them playing.

Last night I went in to check on Ariauna before I went to bed and she was just laying on her bed crying. I could tell she had been crying for awhile. I laid down by her and asked what was wrong and she just cried and cried that she does not want to lose her hair. It broke my heart. It is things like this that tear me apart. I hate to see her upset about something and it is so hard as a mom to know there is nothing I can do to change it. We both had a good little cry and we talked again about how we both need to be strong and tough and brave and that we can work through this together. I know we are going to have many more days that we sit and cry. I love her so much and am so worried about her. Well we don't have any big plans for the weekend other than cleaning some more in the basement in preparation for our construction to start. Sometime we need to go take a look at carpet so that I have a little bit of a say of what gets put down there while we are gone. I will try to post again soon or at least when I have some more updates!