UPDATE...

Ok as promised, I'm getting back here to update on Amelia and Nate. Picked them up from VBS, which I must say they are have a blast at and in a few week another church across from ours is having VBS with a crocodile theme and Nathan saw that on the way to the doctors today and went wild! He is ready to go there. Any way I brought them to McDonald's after for a little lunch. I ran into a friend from Jr high school, it was great to catch up.
Anyway to the doctor we went...she is too sick to get a vein stick to check platelets this week...we did do a finger stick and her platelets were still 27, we will wait till next week and get her blood work done if she is better. The verdict on her is that she has that stupid sinus infection again that has moved into both of her eyes, poor thing has such a hard time seeing in the morning. Her eyes are usually swollen shut...but once I put the eye drops in she is usually OK.
Nathan is not as bad as her..yet, Dr. Casey gave me some Rxs for Nate but said to hold on to them and if he gets worse then fill them. His immune system is up to par and should be able to fight this off better than hers.
It is also that time of year, the time that I dread the most!!! I need to contact Ochsners and see if they still have a hematologist available to do her yearly Bone Marrow Biopsy, we are going to do it some time in July this year that way she will have time to heal from it before school starts. I need to start working on it now though as some of her marrow needs to be sent to Minneapolis and they have to coordinate with their lab. I am just praying that they still have Dr Ducos for us, because I really don't feel like: A) going to Children's hospital...or B) taking a trip to Minneapolis...because if that is the case I AM NOT DRIVING!! Maybe Mimi and I can make a girls trip and fly just the 2 of us, although I know that dad won't be happy with that as he hates to send us that far away with out him to be there for both her and I! But I'm getting a head of my self so I will start next week with trying to set that up here...With all the new research that has just come about in FA research where they are using the patients own skin cells for transplant, Of course it is still a few years out....But I pray there are no abnormalities in her marrow and NO CHROMOSOME 7 abnormality!!! I need to keep thinking happy thoughts, and keep her here for as long as we can!! I still hope and pray we don't have to go to Minneapolis for the winter!!!
I also try very hard not to think about the ever present obvious, the seriousness of her disease and how dangerous a transplant is especially for her as she is so tiny and only has one kidney...you will never know how my heart aches, I just can't imagine my life with out her. I have accepted that, that is a possibility, but of course I am not prepares nor will I ever think I will be prepared for it...
Anyway I think I have rambled enough for tonight...but sometimes you just gotta let it out. So please keep her in your prayers, that she may fight this infection and that it doesn't bring her counts down any lower!!
I would like to try and promise to update again soon, but I have learned not to promise anything...I will though try my best to update on Saturday as Sunday is Amelia's 9th birthday!!!I cannot believe she is 9 already where does the time go?


PS I also hope to be back with Tasty Tuesdays soon too! and some new pictures too....