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.
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.