Today started a bit scary with Rani vomiting a huge blood clot up, but thankfully that was it, nothing else came up. She wasn't very happy this morning. Crying in pain and it is so hard to know what is wrong as she can't tell you. She is not a sooky child, for her age and what she has gone through I am in awe of her strength. So when she cries you know there is something wrong.
But by the afternoon she had had a semi decent sleep and had perked up. She is still into kissing and was grabbing some of her toys and kissing their faces.
I still can't believe that in 9 (well almost 8) days my little girl will be one and unfortunately have to spend it in the Hospital. We really had hoped that she would be home and healthy before she turned one. None of us had any idea that it would drag on for so long and because she is connected to so many different things we can't even take her out on a day pass. :( I guess she will be having two parties one in Hospital and a big one when she is home.
AGAIN I missed Rose and her Dad...but John got to meet them. Rose had a liver transplant in 2004 and had the same condition Rani has and a lot of the same problems. The Hospital actually gave us there phone number and email addy and they have been a great support. Lynne (Rose's Mum) leaves messages on the Blog regularily. I got to speak to both Rose and Shane on the phone...one day I will meet them.
So basically we are still waiting, waiting, waiting for a liver. Hoping that Rani stays 'stable' - a word that I am beginning to hate hearing. Stable but going down hill as this is all part of Biliary Atresia - HA!. It is frustrating to hear everyday and added that they can not do a lot more to help her until a liver comes. I guess the most annoying / frustrating part is constantly being told / reminded how seriously ill Rani is - like we are going to forget!..I mean everyone holidays at the Hospital don't they?
Well last night I scrapped...as I said it is a great way to escape into another world almost - a welcome distraction from waiting for the phone to ring. As John said to me this morning we need a liver to come in so we can sleep a full night, instead of worrying that the phone will ring for either a liver or that she has to go to ICU again.
Here is the LO of Rani and Daddy.