Christmas pics and update

Ok, ok, so i know its late and i havent updated in a while, but i thought it time to put up at update and some photos (since i got a poke from my sister-in-law *waves*).

I will start by saying we all had a lovely Christmas day and its probably easier to say what the kids "didnt get" as opposed to what they did! ha ha.

The first photo is of Daniel wearing his wonderful "incredibles" outfit, courtesy of Auntie Jayne. The second is of Daniel on his much loved "fireman sam bike" and the third is of Daniel and James (my nephew) finally the last one is a few days after christmas with Daniel doing his "plasticine modelling"! Courtesy of our good friend Jan. Olivia is unfortunately not on any of these photos as she left us early to spend christmas day with her Dad and his family...but i can assure you a fun morning was had by all!

My sis, hubby and nephew (plus Mum - of course!) all came for dinner and to be honest it was pretty much like many sunday dinners with lots of mess and toys added in! they all enjoyed dinner - thankfully, and we continued to stuff ourselves all day. The whole of Christmas went by very fast though - too fast and to quote a friend of mine it was very easy to pretend for a few weeks that liver disease wasnt part of our lives.....oh if only that was the truth. (The Lion is sleeping*)

Anyway back to reality now and Daniel and Olivia quickly got back into their school routine, although several days into the term Daniel did say he "didnt fancy going to school today"! I took him for his 2nd flu jab (which is another jab they reccomend because of his immune system) and the nurse weighed him and measured him and in 12 months he has grown 10cm and put on 5kg! which is good going for him, so we where pleased. The jab, however was a bit of a challenge as the nurse giving it to him let him see the needle first and he panicked - i had to hold him tight whilst it went in and you know what - that job (holding him tight) doesnt EVER get any easier for me, just as it doesnt for him...infact as he gets older and more aware it gets harder each time. I just hope when he is old enough to understand he will know it was ALL for him.

I rang St James and asked when Daniels next appointment is, as we where told, by them, Alderhey (our local kids hospital) would be sending us an appointment for Jan. But a few days later we got one in MAY for Leeds??? Weird....think someone has the appointments mixed up! So, basically we still have our appointment in March for our local hospital and one in May for Leeds.....we will get some Labs done then hopefully it will be 9 months since he had labs and my nerves start to take over. The problem? i hear you ask, well let me just educate my "non-liver" friends. There are this group of children i know, all suffer with different liver diseases, some similar/same to Daniels and some Very different, most however, end with the same result - a liver transplant. I read of these stories where by the child is doing well, thriving, developing normally - no jaundice, decent - good labs and for what ever reason go into hospital for say a "simple treatable infection" which end up with a transplant..when the liver is taken out its VERY BADLY SCARRED, so much so it may of only lasted days - this is End stage liver failure and it scares me. No visable signs - frightening. (thats when my Lion moves a little)*

**the reference to the Lion is something a parent of a sick child wrote and is appicable for most kids suffering with a chronic illness. (I think i posted it on this blog, if not i may do someday)

Well, i have come to the end of my update and its a pretty good one, if all goes quiet for a while - that is good in our family!! Oh and if you do visit LEAVE A COMMENT! (anyone can and it makes me think people do read this!!)

Much Love

xx