Wednesday, August 09, 2006

WOW!!!

OK so I haven't updated for a couple of day...but NO still no Liver...lol.

Sorry I had to change the settings to only registered members leaving comments due to stupid spammers having nothing better to do with their lives than leave junk comments on my blog.

Lets seeI came home from the Hospital on Monday night to find a parcel sitting on my bed. It was from the beautiful Robyn. Inside was a beautiful top and some socks for Princess Rani. Thank You they are gorgeous.

Well Rani just doesn't seem as happy anymore. She is very restless and won't sleep, she tosses and turns and just can't find a comfortable spot to sleep. So this is what she does most of the day trying to sleep and not smiling at anyone. Mum and Dad went in on Monday morning..this is the way Dad now spends his RDO's...lol and not even a smile for Grandpa. I eventually got a little smile at 8pm but that was it.

Her extra does of Lasix helped a bit and she lost 110grams but had put it back on by the following day (Tuesday). So on Tuesday she had another Albumin transfusion and Lasix in the middle so again it should clear some of the excess fluid. But her belly is going up by about .5cm each day and it is so hard. If you put your eyes at stomach level on Rani you can clearly make out her liver and spleen they are huge and just so hard...it must be so uncomfortable for her. It is so hard to watch her in this pain and not be able to do anything to get rid of it :(

Well Census night has come and gone and it was a bit sad to fill in the part about Rani not being home, but last night I got a call from my sister saying that Rani had her own form to fill out and that if it was alright for her to sign it...lol

Can you believe it last night I actually scrapped...this is my first LO for August and first one for weeks. I love and hate this photo, it is great to see her happy as it was taken not long after we got out of ICU and it had been a long time since we had seen smiles...but hate it as it shows up her yello eyes, her scratch face and yellow skin....all things from the disease that I can't wait to see disappear when she gets a new liver.

Oh yeah on the scratching side we worked out that it was her wrist band that was cutting her face. She has no fingernails as they are cut every 2nd day, but we were watching her on the weekend and when she scratched at her face she rubbed her wristband on it as well and when her nose started to heal we noticed that they were long scratches. So her band is now on her ankle and no more scratches have appeared on her face. :)

Well last night when I was going through photos to scrap I found some early ones of Rani when she was first admitted. Check out the difference now...to think we struggled so long for her to put on weight and now she is gaining to qiuckly...lol. So in the 4 months...yes today is officially 16 weeks in Hospital, she has practically doubled in weight.

11 comments:

Chrissy said...

Oh Mel it breaks my heart to hear she's not smiling and is so uncomfortable! Our poor wee bubba!I wish I could give her a little cuddle myself today!!

Debbie Y said...

Mel my boys and I are thinking of you and princess Rani and praying she is happy and healthy real soon. I would love nothing more than give her a big hug and so would the boys, can you give her one for us?

Elly said...

Hoping a liver turns up soon x Elly http://www.arthurcelyn.blogspot.com

Bev said...

I am sorry Rani hasn't been happy, the poor little mite. Glad to hear you worked out what was causing those scrathes. The gift from Robyn is so cute, she is almost the birthday girl!!! Hugs to you all

Beck said...

Hi again ... my family and I would like to send something for princess Rani. Do you have a post office box number {or another address?} that we can send it to? Hugs to you XXX

Chris Millar said...

What a lovely gift to receive Mel! Rani has touched many people's lives and is such a little fighter! Your layout is gorgeous, you are doing a wonderful job creating these memories for Rani to look back on one day.

Robyn said...

Mel I am so glad you liked the little gift, I thought something cheery and bright was in order and of course a little frilly for our little girl.
Glad you found out it was the wrist band, one problem solved.
No matter what she is still our little Princess...yellow colouring and all.
Sending hugs,
Robyn ((((((())))))

Jenelle said...

Mel....

I've now bookmarked your blog, just so I can keep up with the news from Rani. Its getting hard for me to even read it now, I can only imagine your pain and hurt from seeing Rani like this. Lets hope something turns up soon with regards to a liver. Give her all our hugs from us all.

Jenelle & the boys

Michelle G said...

My heart goes out to you and your family Mel!!! I have just found your blog through the Scrap Happy site & want to send you some positive energy your way with some big hugs for you all!!!
I'll pray that you get some good news real soon!!!
hugs
Michelle

DenimAngel said...

Sending all our love and wishing, praying and hoping that a liver turns up real soon. How hard that was reading your latest updates. What a brave little girl and a brave Mummy too, I am still wiping away the tears. Know that I think of you often.
Love Susan

Amanda M said...

I just can not believe what a long wait it's been - is there a living donor option?? Is this normal for Australia? I'm just so sad to see the photos of Rani being so, so sick.

Prayers and hugs,