Sunday, July 30, 2006

A Bit Sad

Well another Club Day has been and gone for awards but Teagan said she had a great day, so that is all that is important.

Again I was sick today, so Mum took Teagan to her Competition and John took Josh into the Hospital. After a quick talk to both Rani and her Nurse, I was saddened later in the day when John rang home. One of Rani's (well everyone's) lovely Nurses was leaving and today. She hadn't let any of us know. So I wished her luck in her new job over the phone, its a shame I didn't get to see her before she left. Sneaky will be very strange going to the Hospital and not seeing her there.

That is 3 Nurses that we really liked that have left so we smell??

Of course it had to be the day after John had taken my camera into the Hospital. So he went and asked another Mother (a mother of a liver transplant child) to borrow hers, which she kindly did) and he got some photos for Rani's Hospital album.

So I was doing some calculations last night and as of tomorrow Rani will have been on the Transplant List for 10 weeks. Also on Wednesday it will be 15 weeks since Rani was admitted back into Hospital. I really hope that a liver comes up soon.

Saturday, July 29, 2006

Hair, Hair,

Well the Princess is still doing ok..they have put the oxygen back on blowing directly on her as her levels were dropping to the low 90's but she is certainly more alert and playful and much more vocal.

Josh and Teagan came into the Hospital and saw Rani for the first time in a couple of weeks. Of course Nana and Grandpa had exhausted she slept deeply for the first hour and a half they were there but eventually woke up and played with them.

Then after dinner it was off to do the exciting curlers in Teagans hair. She has Competition Day for her dancing tomorrow and they all have to have curly hair. I was a bit concerned about the length of her hair, as she had it cut short after their end of year concert in December, but it was so much easier and quicker. So I think we will keep it at this length from now on. Although I do miss her lovely long hair. I guess it is up to her, as she was the one who decided she wanted the short hair...bugging me the day after the

Her are some pics of the pretty curlers...i will share some more pics of club day tomorrow.

Friday, July 28, 2006

She's Back

Princess Rani is back in 5W in her own room where she belongs...well she belongs at home but her second home is 5W.

She is much better in spirits today...Mum even got a smile and a giggle from her and she spoke to me on the phone which of course had me in tears. Well maybe not She loves the phone and reaches out for it when you are using it...we put it to her ear and she is so cute the way she holds it...she gets so excited and does her pelvic thrusts and smiles at who ever is in the room but only breathes down the line...pretty boring when you are on the other end...but today she actually made a couple of sounds in relation to what I was was, well to me very

The Nurses at ICU said see you soon as she was leaving, saying that we would probably get the call in the next couple of days...believe me we wouldn't mind...then I could handle her being in ICU.

Thursday, July 27, 2006


Lets see since my last post it has been one all mighty roller coaster road with our Princess.

FORGOT TO MENTION - Buddah is now a whopping 9.1kg...not all her weight and as you can see from this pic, her poor face looks likes it is going to explode. Plus here is Mum who is in every day and in this pic you can see all the different tubes pumping different meds into her.I have taught John well he took this pic :)

The good news is that she will be moved out of ICU hopefully would have been today but there are no beds.

I am guessing this will be short but sweet.

OK lets see Tuesday.

Rani is 11 months old today...I can't believe that in one month my little girl will be 1!

Rani was still pretty much slept all day. They became concerned with her platelet count as it is low and she is not clotting well at all. She was given another Albumin tranfusion. Also it was confirmed that she had a UTI which could explain the spikes in her temperature. She had another chest x-ray and heart scan. They were still concerned about her breathing and she still had the oxygen blowing on her.


Rani seems to be getting better. She was more alert and even enjoyed a bath. They are still very concerned about her breathing as she is panting and taking in to much Carbon Dioxide...they are going to watch her and if it doesn't improve the will have to put her on a ventilator. She is also given more antibiotics and a blood transfusion and platelet's transfusion.


Well no need for a ventilator still not 100% but much better than she was. Her spleen is getting huge and ot only pushing into her pelvis but now up her ribs making it even more difficult for her to breathe. But they have taken the oxygen away and seeing how she goes without it. As I said earlier that would have returned her to 5W but there are no beds available. She was given yet another albumin transfusion and a gammaglobulin transfusion to try and help her with her clotting and platelet count. Today we also got a confirmation that she does indeed have a chest infection but unfortunately the bug she has there isn't anything that can be given that magically makes it go away. One of the antibiotics is helping break the phlem off her chest and she is bringing a lot of it hopefully it will continue to clear and she will be finally rid of this dreaded long dragging bug.

So fingers crossed tomorrow she will be back upstairs.

Mum also got to meet a family that have been lovely to us with emails and speaking on the phone to John for hours. They had a little girl that went through the same dramas as Rani and has had her transplant and is healthy and running around. Mum thought it was great seeing them and seeing the outcome of a great transplant.

Monday, July 24, 2006


Rani is being moved to ICU.

Thankfully it is not for a bleed....but they are concerned about her breathing and think that it is safer for her to be in ICU rather than on the ward.

It may be for only 24 hours but her Specialist has clinic today so we are waiting to hear more from him this afternoon. ICU is better for Rani as the Nurses are able to do things straight away as there is always a Doctor in ICU whereas the Ward Nurses have to page a Doctor and wait for them to respond to be told what to do or get authority to do what they had sugested.

So I will update when I know more.


We do not know how long she will be staying in ICU but things seem to have settled a little. It may be temporary as she had a blood transfussion today. But her temp which was sitting at 38.6 has come down to 37.1...she doesn't seem to be labouring as much to breathe...but the Specialist from the Austin Hospital also looked at her today and said that if she gets much worse she won't be able to have any of my liver.

She is as explained to us 'sitting on a fine line' and she can go any way...good or bad. But her liver is failing more and more everyday so the only answer to getting her better is a new liver.

I have a meeting with the Transplant Co-ordinator tomorrow to discuss the good, the bad and the ugly about being a live donor and then next Monday I start all my tests.

So I have spoken to my sister in London forgot the time difference and spoke to her at 7am her time...I guess it could have been worse.

Had the lovely Chris pop in this morning with some flowers to cheer me up for a quick a couple more hours than she

and now my brother is visiting we will see what tomorrow brings.

Sunday, July 23, 2006


Well they have decided to continue Rani's dosages of Antibiotics to every 12 hours for the next week as it seems to be having some small success.

John said for the first time in days she smiled at him and actually opened her eyes completely and sucked water from a face washer. Her mouth is so dry and sucking a face washer is one of her favourite things to do...she shakes with excitement when she see you wetting it at the tap and is very particular in turning it around and sucking it has also been playing with her taggie (made by the lovely Rachael) which she absolutely loves.

Her respitory and oxygen levels still aren't fantastic but they are higher levels than they were yesterday but she still has the oxygen blowing directly on her face. They can not put it directly up her nose or it may dry all the snot in her nose and she wouldn't be able to breathe, so she is still getting suctioned regulariy to try and relive some of the pressure.

Thankfully there have been no more bloody nappies, so the meds must be doing there job.

Unfortunately her Kidneys are getting worse. The Renal Specialist came in this morning and said that if this continue this way she will probably be on Dialysis by the end of the week. They are again giving her a big dosage of Lasix, one to get the excess fluid out and two to make her kidneys work. There is another option but to do this should would be put into ICU until she had the they are going to see wht happen with the Lasix as her belly is responding as it was down to 52cm this morning but her weight is up to 8.8kg.

She is still sleeping lots but at this time it is the best thing for her. Sleep herself better. So I guess we will have to wait and see what tomorrows bloods tell us.

Saturday, July 22, 2006

Still Worse

Well our Princess is now on one on one care. Which is basically one Nurse that is in charge of Rani and no one else...and we have been given only Senior Nurses.

She was put on one on one care on Friday when she decided to scare Mum. We have been told that we need to press the Emergency button if there is any blood in her vomit. Well one of the times that she threw up there was some dark old speckles of blood. Mum didn't push the Emergency button but the Nurses button (something we never do) and 2 Nurses came charging into the room. They assured Mum because it was black it was old blood that was probably sitting in her belly from her leak. They would be more concerned if it was red and fresh and that if that happened we definately have to press the Emergency button.

We were woken this morning with a call from her Nurse to say that she had an ooze bloody poop. They are all sure she has a slow leaking varice but they thought it best to let us know that it had happened. John was on in his way to the Hospital. There have been a few more bloody poops and she has been put on a medication to stop the bleeding. The same med she was given last time this happened.

She is also having a huge dosage of antibiotics today and John said that it seems to be working. She is not really awake as often but she did acknowledge him and kick her leg (something she hasn't done in days)...when she is awake she seems to be in a daze and not really awake and then she just falls back asleep again. Most of her Meds are now going through her Central Line or into her TPN to try and stop her vomiting plus she is not awake enough to swallow them.

Her oxygen levels did drop to the low 80's but they acted it on it straight away and she is back up to 100% again.

So sleeping is the best thing for her...hopefully her body is fighting her flu..although all tests keep coming back negative for an infection even though when they suction her nose it is green. I am hoping that this round of antibiotics works better than the last lot. It seemed great for a day and then all the symptons that she had returned.

She has heaps of leads coming out of her Central Line. They have taken her off the Lasix dosage while the antibiotics go through so she has bloated again, but should be back on her Lasix again tomorrow as the antibiotics are given over a 24 hour period.

Friday, July 21, 2006

Getting Worse

Well things have gone even further downhill for our Princess.

I was put into a conference call meeting yesterday afternoon confirming that I was willing to be a live liver donor for Rani and that testing has to start ASAP as her liver is failing extremely fast. So hopefully by Monday all flu symptoms will be gone and I can start the work up...which I must say scares me a bit. But in the mean time we just hope that a liver comes in, as if I am the one that does donate I will be in a completely different Hospital to Rani and not able to see her.

She is still full of the flu and sleeping most of the day away. She just isn't herself looking dazed and not moving much at all.

Mum was quite excited today that during one of her brief awake times she actually kicked her legs while Mum read her a book...she didn't move yesterday.

Yesterday she had another Albumin transfusion the second in as many days and today she is having a blood transfusion.

She is bloating up with fluid again and her weight has jumped to a massive 8.6kg but her belly that usually sits at 51.5cm is up to 55cm puting even more pressure on her liver, spleen and stomach, lungs and heart.

She is not actually on oxygen but has a mask around her neck that is on, as she is so blocked with snot she pants while she is sleeping and at least this way she is taking in breathes of good oxygen.

She is throwing up constantly and there is always that fear that there will be blood in the vomit and then we are in big trouble as she will have to be put in ICU and placed on a ventalator.

The worst is hearing all this over the phone as I am still unable to go in and see her.

The Kidney Specialist came in today and doesn't seem to be as concerned about her function as everyone else but none the less wants an eye kept on the kidneys.

So we wait, hope and pray that a liver will come in soon and my baby can be out off this painful ride and on to a fun and exciting ride.

Wednesday, July 19, 2006


I am full of the stupid flu again, this time I have it worse than I did the first time...I just can't seem to kick it and of course am not allowed into the Hospital to see rani. Both Josh and Teagan have had it...Josh a bit worse as I had him home from school on Monday.

Well lets see a bit of an update....

Princess Rani is still gaining weight.

Unfortunately her kidneys aren't coping very well (just to add to everything else), so they are now going to put her TPN back up to what it was and take out one of her diuretics for a week, as her belly isn't as full of fluid and being that she is on 2 different diuretics (one 3 times a day and one twice a day) they think that it could be adding to her kidney problems. So they are removing her from Lasix for a week (the 3 times a day one) and will test her kidney function again in a week and see where to go from there.

Of course everyone is hoping that a liver will come up soon and she is meant to be on top of the list for VIC and we know that she is the only child in-patient awaiting a liver transplant in VIC.

But her Specialist did come in the other day and say that she is the fattest pre-transplant baby (compared to others at the same age) that he had cared for and even he is amazed in her fat

My Sister had her blood test to confirm she is the same blood type as Rani on Monday. We now have to decide whether it will be Rebecca or me that go further with the testing for live donor liver transplant as they will only do work up on one of us. So we are trying to arrange a meeting with the transplant co-ordinator to find out the good, bad and ugly about the operation. Of course this was a last chance thing that we are doing. Both of us would prefer that a suitable liver comes up for Rani, but if we can help save her of course both of us want to help. It doesn't help that time does not seem to be on our sides and work up takes about 3 weeks. They have never had to do a live liver donor here before..they have come close a couple of times and a liver has come up in hopefully the same will happen for us. As it will be horrible if I am the one that does give part of my liver as I would be in a different Hospital from Rani and unable to see her. So fingers crossed that neither of us have to go through it.

Rani also still has a horrible cough and she can't kick it either. Her nose is being suction a couple of times a day and she is having difficulty falling into a deep sleep as she finds it so hard to breathe but there is nothing they can give her to make the cough go away.

She seems to be drinking more orally and I am sure that if should could breathe out of her nose she would drink even more and is keeping most of it down. Her throwing up has lessened in frequency but unfortunately instead of vomiting a small amount a couple of times a day she is vomiting large volumes and they don't know what it causing it. John and I think it is probably due to the added pressure being put on her stomach by her swollen liver and spleen plus as she wasn't using her stomach it has probably shrunk and has to restretch and get used to milk again so can't hold everything in...well that is our theory.

The most upsetting thing I guess is that Rani just isn't as happy anymore. That she is really starting to feel the effects of her failing liver. She doesn't smile very often at all anymore. Everyone used to get big smiles when they walked into the room, Nurses loved it and even if they weren't looking after Rani would come in just to get a smile. But not smiles for Mummy or Daddy or Nana or Grandpa not even for Josh and Teagan. She just looks at you with sad eyes. She still has moments of happiness where she kicks her legs about and does her pelvic thrusts but they are getting less and less. It is just so hard when you know that there is nothing you can do to make her feel better. We can't even pick her up very often as the pressure in her belly just makes her cry and all she wants to do is lie on her back. I will be so happy when this is all over and done with and a distant memory.

Thank you everyone for all your lovely comments that you leave here they truly do make my day. :)

Monday, July 17, 2006

Feeling Robbed

After yet again another bleed scare...thankfully it was only in one nappy and there were no more...I was feeling very robbed.

Firstly I feel robbed that this is meant to be such an exciting time in our lives that we are meant to be enjoying this wonderful child that we created. That instead of being in a Hospital bed Rani is so robbed that she is almost1 year old and hasn't really had any major milestones. She didn't have the energy to do anything and now that she does she is in pain and bloated so can't do anything. She hasn't said her first word, hasn't crawled, doesn't even roll over anymore and just basically lies in her cot all day. Simple things that you take for granted or get frustrated when you feel that your child is behind in development that Rani has just not been able to experience. Josh and Teagan are robbed that they aren't getting a normal life as much as we try but spending every weekend traveling to and from the Hospital can't be any fun and when your parents get distracted with Rani dramas and you spend a lot of time living with your Nana and Grandpa they have got to feel that they are missing out.

It is amazing where you can draw strength from and believe it or not I draw mine from Rani, she is so happy (well most days) and takes most procedures like an old pro. I guess that is one agvantage to her being so young that she hasn't learnt to fear the Docs. She amazes me how she will lie there so still and quietly while they have to do what they need to and once it is finished she kicks about again. So to know that on most days I am going to see Rani chubby smiling face makes it orthwhile.

We can all see the frustration in Rani that she wants to do things and can't. I think the worst is waiting not only for a liver but being on edge everyday that something will go wrong...that a bleed will be worse, that at anytime she can end up in ICU...if I think about it to much I end up in tears. It just seems so unfair that this is happening to Rani if I could switch places I would do it in a heartbeat. It just seems that we are getting constant bad news...that things are failing and both John and I wake at ridiculous hours of the morning with horrible feelings...hence the reason that I am typing this at 1.30am.

We had the Parent/Teacher interview last week and obvioiusly this is effecting Teagan more than she lets on as everyday she tells her teacher that Rani is ok and still in Hospital or updates her with what she has heard us discussing. This is not something that a 9 and 8 year old need to be worrying about, they should just be enjoying being kids and nothing else.

We were admitted on Wednesday 19th April for 2 nights to maybe a week and Rani hasn't been allowed to come home. Believe me I know that this is the best place for her, that the TPN has been a life saver, that if anything does happen she is in the best care...but to not have your baby girl home for now 13 weeks and still not knowing when she will be home is hard on anyone to handle.

I mean it has turned everyones lives upside down including all of my family. I don't know how I would make it through this time without them. Mum and Dad have taken the kids most nights during the school week. Mum sits in the Hospital every morning (except for Wednesdays) so I can do things like pay bills, washing etc before I come into the Hospital in the afternoon. My brother comes in every Monday and Wednesday night and my sister comes in Friday nights and sometimes Tuesday and Saturday nights depending what she has on, just so John and I can spend sometime together. Then on a Sunday Mum and Dad come in for an hour or so visit.

Then to top it off Mum and Dad are letting us all move into their house for a little while as we don't have time to find another house to move to. So at least that is one stress of our minds and we can put our energy back into Rani, Josh and Teagan.

I am eternally grateful to my family and have no idea how we will every repay them for what they have already done and what they are doing...but Thank you just doesn't seem like enough.

Plus having friends and other family checking up on us to make sure we are ok and just knowing that you are thinking of us makes us feel very special.

Friday, July 14, 2006


Miss Rani weighs an amazing 8.005kg....I can't believe that she has actually made it to sounded like such an unachievable weight as she struggled for so long just to get to it was amazing to hear that she had finally made it to the 8kg that the Surgeon wanted her to be at for the liver transplant.

But not to much celebrating because not long after the weigh in her specialist came in and told us that her bilirubin levels are raising due to the added pressure the TPN is putting on the liver. We knew this when she had the Central Line put in and the TPN was only meant to be a temporary fix to help her gain weight and put back all the necessary nutrients and vitamins that she was lacking.

To try and take some of the pressure off her liver they have tonight lowered the amount of TPN per hour and are wanting her to drink more from the bottle. Every 2 hours she has to have a blood sugar level test to make sure that they don't drop. The one after they lowered the TPN was better than the one they did before. But unfortunately as much as she wants to drink she is bringing it all back up again and her spleen is still hurting so we can't even sit her up while she is being sick.

So I have bought a bag full of dirty clothes home again tonight...I think I wash more of her clothes than I do of all of ours and she is in a bed all day.

Grandmas short visit ended and John and the kids took her back to the airport. Here is one of the pics taken at the Hospital before she left.


Today Rani had another Albumin transfusion...they are now twice weekly. Although her belly isn't as large as it normally is and looking at the photo with Grandma, I can't believe how fat she

Although to top our day off we were told that now they are concerned about her kidney function...they are weighing all nappies, but also watching it from her blood. It amazes what information they can get out of blood. Her Specialist is trying to get her higher on the Transplant list because of her levels and that she is at final stages of liver failure. Although they have been waiting for the perfect liver to come in but we may have to get a good liver rather than a 'great' liver.

It sounds so blase' to say that we are waiting for the perfect liver when some family has to make the ultimate sacrifice and put their childs/family members organs up for donation at such a devesatating time in their lives. I am sure that the decision is not taken lightly and the day that we get the call to say that a liver has come in we will be forever in debt to the person who sacrifice made our daughter healthy. Of course John and I have always ticked on our licence to be Organ Donors but never really thought of the full effect that it has.

If you are not registered and are interested in registering, you can register online at:

Thursday, July 13, 2006


Well yesterday was my 'all day' day in the Hospital and it was like payback for not being in for a couple of

Miss Rani was very happy in the morning when I got there, laughing and playing and then things went down hill.

She needed to get a culture taken from her nose to check on her cold. Basically they stick a small suction tube right up each nose and suction..they do it regularily to suction the gunk out of her nose so you can breathe. But when they did it this time straight away it started to bleed and lots. Everyone including me was concerned that they may have knocked a varice, one of the Nurses (not stayed with me for 40 minutes until her nose stopped bleeding. We took it as a good sign when she sneezed and we saw no bleed. Crisis overted.

THEN about an hour later I gave her her meds...the usually thing happened she threw up. But this time there was blood in the vomit. Logically I knew it was probably from her nose but as soon as I saw blood I burst into tears. The same lovely Nurse that had stayed with me again came in when she heard and gave me a big cuddle. We were all sure it was from the nose bleed and that she had just swallowed some of the blood. The Gastro team were called just in case and they thought the same thing and just to watch her.

Well the rest of the day went pretty uneventful. Managed to get Rani to drink 40ml in one go...she really isn't into drinking from the bottle. Plus saw that again one of the Mothers was back in with her daughter...then another was admitted and then I was told that another one from our old room was on the 7th the original room is all back in the Hospital!!!

THEN to cap my day when I changed Rani's backside I again saw blood in her nappy. Again the Gastro team were called, this time her specialist came down to see us. He was mildly concerned but because it was fresh blood he was sure it wasn't from a varice perhaps the poor thing is getting hemorrhoids. He still wanted her watched, so she was placed on hourly obs...but thankfully there has been no more bleeds.

So I was exhausted when my brother came in at 5.30 for his shift. Of course I was stuck in the middle of peak hour traffic so it take me an hour and half to get home. So when I got in I was so exhausted that I wasn't much entertainment for John's Mum who is staying with us until Friday, that I ate my pizza with them and went to bed. But she got to spend time with the other 2 kiddies when they finished school and is seeing Rani today...which should be exciting as she hasn't seen Rani since September last year.

Monday, July 10, 2006

Have to Brag!!!

Our girl is an amazing 7.91kg so close to that elusive 8kg that we would laugh about when the Docs would say that they wanted her to be at least 8kg for her transplant only a couple of months ago...we never in our wildest dreams thought that she would get to this weight. As the Surgeon said today at 8kg they have a 90% success rate, so we are happy that she is almost there.

Now to make things perfect we need the perfect liver to come in and for her to be home and healthy.

Sunday, July 09, 2006


Well the Docs have looked over Rani's X-rays and they can't find any they like us are assuming it is the pressure that is being placed on her overly enlarged splein. It really is heartbreaking to see the tears and hear that agonising cry and know that there is nothing that can be done to make her feel better. Thankfully she is allowed Codine to try and relieve some of the pain, but because of the pressure she won't sit up as it hurts to much which makes cuddles harder.

We are very nervous tonight as we have a meeting with the Surgeon tomorrow morning that will preform Rani's transplant. We have been told by the Transplant Co-Ordinator the ins and outs of the operation but it is always different when you hear it from the Surgeon. Well perhaps not nervous but I guess meeting the man that we are puting the fate of our child into his hands is scary and making things even more real.

Although I was shocked tonight when our Nurse said that Rani will be 1 next month. I had to stop and think and yes next month it will be her first birthday. Most days I don't even know what day it is let alone what So there is probably no way of avoiding her 1st birthday in the Hospital which is a shame...I am just hoping that she has had the transplant is well enough for a day pass.

Well here is a pic of John and the kids I took today at the Hospital.

Still Scrapping!!!!

Well I spent the afternoon with Rani until she fell asleep. We still haven't got the results of the X-ray...but they think the pain could be caused from the pressure on her spein as it is really enlarged plus her liver is also enlarged and as hard as a rock. When she is lying down you can see both organ sticking out from her belly.

She really is a trooper, always so happy...but we are concerned at how often she is throwing up...pretty much everything that goes down her throat comes back up and she is eager to take meds, a bottle and food we are not forcing anything into her. Her mouth is open and ready which makes it even more heartbreaking when it comes back up again. Her cold seems to have gotten worse but all the test show that it is not an infection cold and there is nothing that they can give her to get rid of we just have to listen to her bark.

Well before i went to the Hospital I scrapped and when I got home I did another page...I am addicted to BG of the 5 Lo's that I have done this weekend have been BG.

Saturday, July 08, 2006


I joined in tonight with Memories and More Midnight Madness Online Crop and I got 3 LO's done.

I can't remember the last time that my MOJO was flowing like this..or that I did 3 LO's in 1 day.

So here is what I did tonight.

Friday, July 07, 2006

Good and Bad News

The good news is that they still haven't found a fracture in Rani's legs the bad news is that this afternoon she had an X-ray of the lower half of her legs to see if there is one there as she is still screaming when you lift her legs to change her nappy.

Also some bad news for John his blood is not compatable for Rani has is A+1 and needed to be A+2. So both my sister Bec and I know that we are O+ the same as Rani so we are going to start the work up. I wish that neither of us had to do this but hopefully a liver will come up and it won't be necessary for either of us to have the op. Not that we don't want to do will be a killer to not be in the same Hospital as Rani and see her get better. So we will patiently wait.

John and I are off to see the Transplant Surgeon on Monday to discuss everything and actually meet the man that will be saving our daughter. We have seen him in the halls of the Hospital a couple of times but maybe for only 20 seconds. So we are excited but also nervous.

Well nothing much else to say Rani is not gaining a lot of weight compared to what she was. She put on 20 grams in 2 days. But she is 7.78kg...closer to the 8kg that they asked her to be which months ago just seemed like a fantasy.

Thursday, July 06, 2006

Do you believe in Bad Luck!!!!

To add to all the drama that is going in in our life at the moment, we got a letter from the Real Estate Agent we rent from stating that the owners want to move back in and we have 60 days to vacate the property. Really we only wanted one more year, as we were getting ourselves together to build again. But it is just the worst timing in the world. And knowing our run of luck lately we will arrange to move and on that day we will get the call that the perfect liver has come in for Rani. They know our situation but are getting in now as our lease expires around the same time. I really don't have the time to run around and look at what is for rent...we are hardly home as it is....

Then I finally after getting better get to see my baby girl to be told that they think she may have broken her leg. She would scream in pain everytime we changed her nappy and wouldn't sit up, throwing herself back into a lying position. They did an x-ray of the top half of her legs but can't see any fractures. So they are (today) going to get a specialist to look at them and perhaps do more x-rays of the rest of her leg. The only thing that scares me the most is that she already has extremely weak bones and when she has the transplant she is put on steriods which makes the bone density even many breaks will she end up with?

Well we found out that John is A+ - which he can use with Rani's blood of O+. We now have to wait and see if it is catergory 1 or 2 as only 2 can be used for the transplant. But then there are so many other tests that have to be done before we get to it looks like at least another 2 weeks or more of tests.. but 'IF" everything goes well it is elective surgury and could happen in around 3 weeks if the perfect liver doesn't come up first.

Well yesterday afternoon I picked up 2 very tired munchkins from camp. They both looked so exhausted, but just glowed when they told me everything they did. I told them they needed to go to bed early...they objected but within about 2 minutes I could hear

Tuesday, July 04, 2006

I scrapped

For the first day in ages I felt well enough to scrap and tomorrow am back to the Hospital to see my girl. It has almost been a week since I have seen her and it is killing me.

She is (as I am being told) doing really well. She is up to 7.7kg but still has the horrible runny nose.

John was having a blood test tonight to see what blood type he is to see if he is a match for person to person liver donation. I know for sure that Rani and I are the same blood type, but John thinks it is to risky an operation for me. This of course would only be a last resort if Rani absolutely needed a liver and there were none available.

So this is what I came up with today..not sure about it as it wasn't what I pictured but then again none of my pages turn out the wayI pictured is my little sister who is in the Hospital with Rani tonight.

Monday, July 03, 2006

Well a very excited Josh and Teagan left for camp this a quiet house until Wednesday. I think this is the first morning that I haven't had to wake them to go to school. They were ready and waiting at 8.15 this morning. But what a bad scrapping Mum I forgot to get them cameras.

Well I am still sick and unable to go the Hospital and see Rani. But from what Mum has told me she sounds like she has got the flu back. Her nose is completely snuffed up and she was put on oxygen last night and part of this morning as she was having some difficulty breathing..which they are sure is only because of her nose. Unfortunately she now has a barking cough, so they have taken some cultures to make sure it is not a viral infection but unfortuantely there is nothing they can give her to clear her nose.

The poor little girl just isn't having a good run of things. She has the worst nappy rash that they actually had to get pharmacy to make spme cream for her.

But she is obviously sleeping herself better, as I have been told that she has slept most of the day away. I wonder if she will stay awake for my brother tonight.

Speaking of my Sunday I went to his tupperware party..yes got an certificate and knife from Tupperware Australia for being the first male to host a party...I was suprised at how many males turned up to the party...but it was nice to get out of the house for a little while and hopefully I will be able to see Rani soon.

Saturday, July 01, 2006

Hope it was a Lovely Wedding

Well today Johns brother Mark is getting married. We were hoping to get up to Queensland for the wedding and to catch up with family but were unable to...

I hope you had a Beautiful Day today.

Best Wedding Wishes from all of us!!!