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