In the world of transfusions...everything went really well. Lauran was in a great mood and really cooperative for the exam that the Nurse Practitioner usually "tries" to perform on her. She even answered some questions...like "where are Lauran's ears?" Usually it is all crying and/or screaming!
Her hemoglobin wasn't any lower than usual which surprised me...she was so tired the 2 days leading up to her transfusion that I really thought it would have been lower. Also her iron levels have stayed very stable so far and are still slightly under the cut off of needing to give her medication to reduce her iron. At some point they still need to do a liver biopsy or MRI to check iron level in her liver but we are not at the point of needing to do that yet....which is good!!
So here is a little she said, I said for y'all.....not that I am southern or anything.....just wanted to say that :) The nurse taking care of us this month asked at one point how it is going (health wise) now that Lauran has been transfused a few months. I said "good...she just doesn't feel good the week leading up to the transfusion". Then she said..."Oh will she need this long term, like for the rest of her life?"Then I said ...."yes, the only cure is a bone marrow transplant." Then she said "Wow, that is heavy" and I thought to myself...it sort of is a little bit when you use the words "the rest of her life" So even though it is starting to become a normal routine for us, I still have moments that make me ponder all the many medical things that Lauran will deal with routinely, throughout her life. Yes they will be a routine, but I am sure at times it will seem like a lot still for her. Watching her deal with so much fatigue this month made me think too about the future....when she has to deal with school, activities and so forth. I also thought about her life in China, when they were transfusing her every 6 weeks and how she must have felt for those 2 weeks when her hemoglobin went down below 10. She has gone through a lot and she is a very brave little girl!!!
And finally we did fit in some makeover fun, but I haven't uploaded the photos yet. When we did it she was starting to get really tired so it didn't last long....she just wanted to lay and watch TV. She never did quite fall asleep though ...the place was really loud this month. The infusion clinic is just a big room with recliner chairs and curtain dividers. A few patients decided to have loud TV's. Anyways...all went smoothly and hopefully I will get a couple pictures posted soon....even though they are not the greatest pictures....the lighting was not too great and she was tired. Oh well!
