Wednesday, August 16, 2006

A Bit Better Today

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.

14 comments:

Sal :-) said...

I'm so glad she is back and still in 5W :)

I do pray that the next she sees ICU is because of the liver. This waiting and totally unkown timeframe must be so hard to bear.

Thinking of all of you always.

Hugs,

Sal

Chris Millar said...

It's so sad to hear of Rani being in pain. Wish I could take it all away for her somehow. I never know if I'm saying all the right words Mel, but I hope just by dropping in here that it is of some comfort. I want to hug you all and tell you it's all going to be ok. Thinking of you every day!

Jenny said...

I know this won't be much compensation at all, Mel but she brought up a CLOT.........not blood. That means what they have given her is working. As I said, little compensation.

I really don't think the staff mean to remind you how ill she is. Just tell them, Mel, not to say anything unless there is a change. Must really feel as though they are 'rubbing your nose in it'.......

Your LO is so beautiful. Expresses a dads love so well. Rani looks so laid back and 'cool' in Dads arms.

Sending tons of love,
Jenny.

Debbie Y said...

Mel it's great to hear that Rani is back in the ward and out of ICU.

I know it would be a thousand times better to have her at home with you all, safe and well, and I truly hope and pray that she gets a new liver very soon so that can happen.

Thinking of you all,
Deb.

Chrissy said...

Heya lovey, I'm so glad she was happier this avo, she must look adorable kissing all her toys. You must get a piccy of that if you can, just so gorgeous and kind hearted of our little girl! The lO of her with her daddy is so precious too! :)

Love you sweetie, biggest hugs to you both!
Chrissy xx

Rachael said...

Hi there beautiful!!!
How cute all that kissing - and great to see yet another fabbo page from you. We are going away for 3 days - so I can't check on the blog. I am sure someone somehow will let me know if something major happens - thinking of you xoxoxo

Bev said...

Love the layout of Rani and her Daddy! Good news that Rani is out of ICU and was a little happier this afternoon....what a little fighter she is, I hopethe wait for the liverisnt too much longer. Its great you are able to speak to Roses family for support Mel.......

parkyslot said...

Great News Rani is out of ICU love the LO with her Daddy.

Glad she is doing a wee bit better, what a brave little girl she is. Thoughts and prayers for a liver real soon.
Hugs and kisses
Parky xxxx

Jenelle said...

What a little fighter you have! Glad to hear that Rani has had a few days of happy, and being able to give you both smiles on your faces. Hopefully the wait isn't too long. You are all in my thoughts. Love the layouts you are doing, I'm surprised you still find the time. Thinking of you all.

Jenelle

Lynne said...

Rose and Shane were privileged to spend a bit of time with Rani and John. Rose has spoken of little else.

Rose also had her first birthday party in the hospital, waiting for a liver. It was actually the most wonderful day - so much love from all the staff, who made it very special for Rose and all of us.

Thinking of beautiful Rani all the time, and hoping that for you guys this interminable waiting will soon be over. We all know that what Rani needs for her birthday is a liver.

Debbie B said...

Hiya, Mel
Great to hear that Rani is back in the ward. Love your LO of Rani with her Daddy.
Sending hugs and prayers to you all. Hoping the news of a new liver is not too far away.
Thinking of you all

xx

Robyn said...

So good to hear Rani is much happier and back on her ward...love the kisses bit! This is a great LO and you definitely have your sacrapping mojo working on high!

Michelle B said...

Thinking of you Mel and your princess. Praying always for that liver to show up. Keep your chin up, hugs

Michelle B

Tassie Deb said...

What a fantastic lo of John and Rani, Mel - truly stunning.

hugs to all
TD xoxoxo