I have uploaded some images of Xantha's memory garden for people to see, we have some truly lovely roses in the garden with butterfly solar powered lights, her name is spelt out in stone. Peter did a good job on it. Yesterday was a pretty hard day for me, I didn't stop thinking about her all day. I wallowed for the last couple of days in misery, but woke up feeling beter today. Tomorrow it will be exactly one month since she passed away, I hope that I will be ok then.

I can do it!

Hi Everyone,
Yes, its been a tough couple of months and I've had a tremendous amount of support from family and friends alike, but now I need to start to put my life back together. While I managed to lose all my baby weight straight away, during the last passage in time in Melbourne I manages to put 7kgs back on, which is really terrible, though not surprising. I have decised on two goals, one long ter and one short term. Short term I need to lose that 7kgs by the end of the financial year, Long term I need to loose 22 by October 6th which is my bridesmaid duty in Melbourne and I can't wait. If I make this goal, and Peter has made his goal by then as well, we may decide to try for our next one, but we both have to have completed our goals before we do, and we are not going to do it earlier than then even if we meet our goals earlier.

Thanks everyone for your support over the last couple of months, it has made me feel so much better about myself, much appreciated.
Mel

Bright and early today, well maybe not bright...
Xantha passed away on Sunday morning in my arms at the Royal Children's Hospital at 9.50am, surrounded by family and friends. After we all had a hold to say goodbye, Peter and the nurse gave her a bath, wrapped her in bandages and dressed her after making handprints and footprints for her. We drove her home on Monday afternoon, my great aunt, who is a funeral director, picked her up that night. I though I was coping well until it was time to put her into my aunt's car, but I broke down completely, I just couldn't bear to let her go.

Yesterday our minister came over to help us arrange the church service, he has prepared a lovely photo presentation to be shown at the service instead of saying a life story, as it would more accurately depict her life than any words he could say.

I feel like I'm in some sort of surreal reality at the moment, there are times when I am doing something and then I realise that I'm not thinking about her, and I start feeling guilty, and then this morning when I got up to go to the bathroom, I checked her cot on the way back, and remember that she would never lie there again. I don't know how I'm going to get through the funeral on Friday...

Mel

My Beautiful Girls!

Hi Everyone, as promised, new portraits of my two beautiful girls, the black and white one of Xantha is my favourite!

Have been busy with Xantha's baptism over the weekend and now am helping mum and others setting up the Xantha Maree foundation to help with Xantha's medical expenses etc. A fantastic friend of mine is setting up a website at the moment about it at www.xanthamaree.com if anyone wants to look see at it, its not quite finished yet, but will have most of the i's dotted and the t's crossed by the weekend. Our local newspaper is also doing a story on Xantha, and the article will be uploaded to the site on Saturday so you can all read it there then.

Thats about it for now, not much time on my hands at the moment!

Mel

We are home!

Hi Everyone!

Yes, we are home!

For those that don't know, Xantha has been diagnosed with one of the more severe types of Epidermoloyis Bullosa, Junction Herlitz type. This type generally ends with death in infancy, according to one medical website, approximately 87% of babies born with this type pass on before they are a year old. The last three weeks have been completely up and down both mentally and physically, and I am still trying to get a hold on my feelings. Its not easy in this world of no disposable nappies, no dummies, and layers and layers of zinc cream on her bottom to protect her extremely blistered bottom, and when she screams when you change her nappy, I wonder if it isn't hurting her just as much.

I seem to be coping better by being more accepting that she will probably die within in the first year, as much as I would love to have her longer, and hoping that when something happens, it will be easier for me to handle. While there is always hope that some sort of gene therapy to help her in the near future, I refuse to get my hopes up as I have seen them dashed too many times over the last month. We have also booked in Xantha's baptism for the 24th March, we had originally planned for it to be when she was 4 months old like we did with Jules, but decided it was better earlier, so mum is busy making sure she will be able to wear the family christening dress.

On my own personal note, I weighed myself when I got home and I was nearly a kg lighter than when I fell pregnant! I was very excited about this, I don't know if some of it was due to the stress I have been under lately, but it is so good to be home, even if the bathroom really needs a clean, and my floors really need a sweep. I am trying to get back into my flylady routine, but I believe that will take some time. Luckily also, hubby has arranged to take an extra two weeks off work so he doesn't need to go back until Easter which gives us a little extra time to be settled into a routine by then.

Thats it for now, will try to report often and add more pics as much as I can,

Mel

Pictures of Xantha!

Xantha Maree

Hi Everyone, thank you for your kind wishes, truth is that Xantha is a healthy, BEAUTIFUL little girl, no complications in her birth, however has been diagnosed with a skin condition called epidermious bullosa (sorry can't spell it will try to write it down when I am next online. She was taken to Melbourne at 12 hours old to the Royal Childrens Hospital for treatment, I was driven down on Saturday where we have been learning how to treat her condition. Don't go and search too much on line for it as most websites are for the worst case scenario which we think she does not have, we are still waiting on test results to find out how bad it is and whether it was inherited (but that doesn't seem likely).

Basically her condition involves any "mechanical trauma" to her skin becoming a blister which needs to be lanced, and dressed to protect from infection. Its been a difficlut couple of days, we are now staying at Ronald Mc Donald House at RCH in Melbourne, have been very busy expressing as breast milk is the best thing to help prevent infection. I have been doing some breastfeeding, but she definately prefers the bottle, but I am hoping that with some help from the lactation consultant that we will have her mostly at least breastfeeding before we go home (don't know when as of yet).

Will hopefully post some photos soon, not sure how yet,
Mel

Another day...

Here I am as promised, still no labour, just lots of practice contractions, and generally being uncomfortable. Spent a very lazy day yesterday resting, hoping to do some more today, but will also do some cooking as dad has provided me with some more homegrown zucchinis, so will make some delicious zucchini vege slice, hubby could eat it by the dish load! Freezes well too, so am going to make a double batch and freeze one. I have also added some pics from my sister's engagement party, Jules was so cute in a little dress that mum bought for her, the theme was Australia Day as you can see from the dress Cristy is wearing and the cake that my Aunty Marg made, she said it was a great change from the hundreds of flowers she normally has to make for weddings!

No, I have not gone into labour yet

Waiting, waiting... feel like I am playing the waiting game, it is starting to drive me up the wall being home so much and not being able to do much, I feel so physically restricted. Still, by this time next week, we will have our baby in our arms, so not too much longer at least. had another doctors appointment on Monday, everything is fine, blood pressure has gone down again, still thinks its a girl, but like I said, will have to wait and see! Had to go to a preadmission surgery clinic yesterday, felt like a waste of time because I was there for an hour and a half, but only saw the doctor for about 10 minutes, good thing I'm so healthy except for my weight! Thats all I can think of for now, will hop on over the weekend and add some pics.
Mel

I'm so tired of being pregnant...

Very familiar sentiment, not long to go now, I know, but still... Went to the specialist and he has reccomended the caesarean, so has booked me in for the 15th February, assuming I don't explode before hand (please, please, let that happen...). He also did an ultrasound and was able to confirm my mum's thoughts on the gender - he thinks its a girl too! Although I still haven't unpacked my pink stuff yet, leaving it all neutral until I find out for certain (ie after the birth, don't want to have to pack it up again!) Have been organising my mum's 50th birthday, just something small, only about 20 people out for dinner at a restaurant for the begining of March, as well as helping mum with preparation for my sister's engagement party, have a few slices to make, and some dips etc, nothing too major, stuff that is quick and easy and does not require me to be on my feet for too long.

Hope everyone has a great week,
Mel