Suzie (the doll) has had many procedures done. When Taleah feels well enough, it is the one thing that she has wanted to do. It is interesting to hear her talk and watch her "help Suzie". It gives me a little insight on how she feels.
She has been sleeping in until 11 or 12. She usually takes a small nap around 7 and then we are up until 11:30-12 every night. It seems to be when she feels the best.. after the bath and I feel bad making her sleep when she feels good enough to play. Ha. Totally against my rules!! I will say that I enjoy our little talks, prayers and songs before bed. Her prayers are very sweet and sincere and often times make me want to cry. I am usually up 5-6 time throughout the night, silencing alarms, changing her pull-ups (we have regressed in that area) and calling in the nurses in. Now that she is on oxygen, I am constantly making sure it is right by here so she doesn't drop into the 80's again. The vitals, weigh in and rounds with docs start at about 7am, but she usually sleeps through it all. It is slightly draining but worth it. You would think that I would get bored in the room all day, but somehow it is extremely busy and exhausting.
She has been throwing up a lot over the last 2 days and it may have to do with the fact that we eliminated Ativan so I think we will be adding that back in. I just hate the way it makes her act but I think that will be better than throwing up a lot. The oxygen is being used most of the day, we are trying the Lasix twice a day to help with high blood pressure and swelling. The suction has been extremely helpful with the thick mucous in her throat and she has been swallowing the pill much easier .
Her WBC is still 0.1. We have made no progress on the labs that are drawn every morning. It is staying the same which is better than it getting worse. I was hoping that we would have a faster than normal engraftment, but it looks like we might be lucky to have the average which is day +19. And then there are a bunch of other things to worry and wait for. One thing at a time, right?!
I was able to attend church at PCMC today. Let's be sure and mention that it was 30 minutes long and full of good stuff! (my kind of church.. is that bad to say??... oh and I went in my sweats) It was hard to hold it together (surprise). The spirit there was very strong. I wish I could say that I got a feeling that everything is going to be perfect and painless, but I didn't. BUT I did feel a sense of peace and love. I felt God's love for every person there. It is very hard to describe the different emotions I felt but I do know that I felt an overwhelming amount of love.
I also attended my nephew's baptism. It was great to be surrounded by family, but I couldn't help but long for my little family to be together again. I wished that Taleah could have been there singing the musical number with her cousins, and wished that Slade could play with his buddy Jett and wished that I didn't have to keep the babies away from the little kids. The night was not about me and my family or what I was wishing for... and there were so many great things that happened there tonight. I am just an emotional rollercoaster and those were all things I felt while there.
On the bright side, it is 12:30am and Taleah is happy and acting like herself!! We got to facetime Slade and the two of them were acting like they usually do (saying, "goodnight corndog" and coming up with one million things to say to each other). I was able to spend extra time with the babies and talk to Scott on the phone while I was driving (which is more than I usually can when I am here). Focusing on the positive is all we can do at this point. It is not always the easiest but probably the healthiest thing to do.
Hoping and praying that things will move along quickly and Taleah can get healthy. I am aching for a "normal life" and a happy one for Taleah. She continues to ask about all of the things she can do when she is better. Disneyland is one of them. Not to wish away time, but I am ready for it to be the fall/winter and know that Taleah is 100% donor (Tait). I am getting ahead of myself.
Patience is key. Rely on Miracles.