Wednesday, April 2, 2014

Day 8

Taleah has been extremely tired and having a hard time sitting up. She wants to lay down and watch a show, which is not like her at all. The sad part of it is that she doesn't even really watch the show, but just stares. I have tried offering games, coloring, any type of distraction but the noise and energy of it all makes her upset. I miss my spunky girl.
She received another platelet transfusion before her LP today. Her appointment was at 1pm so she had to fast all morning. She did a pretty good job with the procedure and recovered fairly quickly. And I think I have found the right combination of meds that reduces her nausea after sedation by a lot! We were anxiously awaiting the results of the CSF because of the 6 leukemia blasts they found last week. The sample contained 32 cells and they said that none of them were blasts so that is great news. We will test again in 1 week in hopes that it will have the same result. She did receive an extra 2 chemos intrathecally, so we will see how that affects her. She also received some chemo through her PICC line.
Her immune system is officially down. We will need to be very cautious due to her lack of ability to fight any type of infection. She will also receive a blood transfusion tomorrow in hopes that she will gain some energy and lose the headaches.
We will hopefully find out if the kids are a match in 1 week. The anxiety just might put me over the edge, but I just have to remember that it is out of my control. That is a lesson that apparently I still haven't learned.
I must say that I am grateful for the small things though. We have had the twins at the hospital for 4-6 hours a day. We have laid down a mat and let the babies play. Taleah has loved having them there and I think it has been therapy for her. I have been worried about missing milestones for the babies. Sloan made a point to roll over at the hospital when I was playing with him. Tait had previously showed him up and now I got to see Sloan do it. It sounds silly, but those are the things that I want to be a part of. I am still struggling with how I will find a balance in all my kiddos, but I need to trust that it is going to work out.
We are so lucky to have amazing people behind us. It really makes a difference. We feel very blessed to  at least have that much to help us through.


  1. It's not one bit silly that you want to see the babies milestones. You are their momma. They are blessed to have so many people who love them and will help care for them, but no one will ever replace how special you are to them, and them to you. You are doing a great job. Love you.

  2. I am so sad that Taleah and your family are going through this all again! Reading your blog has shown me what an amazing mother you are and I am grateful you share this story because you are such a great example of strength and faith! We pray for your sweet Taleah and want to help in any way we can. We looked in to the link for the bone marrow donations but it didn't work so I'll keep looking online for the information to see if we could help that way! I can't wait for raglan to get the window stickers back in because we want to put it on our car to show our support and love for your sweet girl! I wish I knew how to help more but we will continue to pray for taleah and your family and we can't wait for the day when Taleah is back at Raglan cheering and brightening up the place with her infectious smile! We miss you Taleah good luck sweetheart! Ü