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

Nothing much to report

As the title says, nothing much going on here, still fighting the unending battle to keep the house tidy, and sick of having to be inside most of the time, but if I step outside for too long my ankles become balloons and I can't be on my feet for too long because of my back problems. That said, I am breaking out tomorrow, going to visit mum for the day (thank god she has ducted cooling), as well as catch up with some friends I haven't seen in a while. I have my dioctor's appointment on Friday to find out my birthing conditions, what he reccommends for me, I only want to do what is best for the baby, and if that means another caesar, then so be it. If he thinks I should be able to have a normal birth, then I will probably go for that too, will decide on Friday.

Will catch up with you all later,
Mel

Christmas Photos!

Here as promised are Jules' christmas photos!

Not much else has been happening, have not completed everything I wanted to and have had to put some of it off as I cannot do very much with out my back and butt going spastic, Peter even has to do groceries for me today because I can't be on my feet for too long.So a nice quiet day is planned today, Jules has gone to her nan and pop's house and she can go swimming there, and I have the house to myself this afternoon, will be relaxing on the couch, watching DVDs and sorting baby clothes into boy, girl, and unisex so I only need to pull ou the boxes I need when the time comes. Thats it for today,

Mel

Happy New Year!

Well, its been a busy two weeks, I am so full from eating that I can't move off the couch. Actually there is another reason why I can't move off the couch too much, I'm too tired, too big and my feet and ankles are doing the tingly "I'm swelling up so you can't leave the house becasue your shoes won't fit". Fun I know. Went to the doctors on friday, she said that baby was doing well, I'm still 3cm ahead of where I should be, but she's not worried, and on a brighter note, my blood pressure has dropped since my last checkup, probably a side effect of finishing work!

So thats the baby update. Now for the Christmas one. We had a great christmas, Jules especially was spoiled rotten, recieving from Santa a new swing set with slide, a bike and helmet from mum and dad, and an assortment of toys from grandparents and aunts and uncles alike! Peter gave me a new camera, with anti shake capabilities, so I will stop using his camera and actually get better photos! will load on some christmas pictures soon.

Had a nice quiet new year's eve, but had some great news that my sister got engaged... so congratulations Cristy and James, thinking of you last night, hope you had a good day ring shopping, can't wait to see the it when you come visit in a couple of weeks.

I am trying at the moment to get my house finally cleaned out for the first time since the renovations have finished, not easy at the moment when I can only stand for a certain length of time, am hoping to be up to date by the time peter has his next four days off which is from friday, so I have written a list of what I need to achieve each day, and am taking it slowly. Peter has his own list that I wrote up for him to do one or two things a day while he is working too. On his days off we are hoping to tackle the shed and get the rest of the baby things out of storage, as well as get ready for our garage sale in four weeks time, need the money before baby is born!

Thats about it for now, will hopefully load on the pics a little later today,
Mel