tube weaning.... food can be fun.

well this week we started the tube weaning and what Mum and I do is play alot with my food. I get it all over me and in my ears , all over the place. hehe

I didn't realise food was so much fun and every now and then I chew on a bit and swallow it. Other times I still choke a bit so we are taking it nice and slow.

Mum and I had lots of fun together this weekend as Daddy went to Victoria for 4 days. It was the first time Daddy hasnt been here since I was born and it was great to see him yesterday. Mummy did such a good job looking after me and we had lots of baths. I was a bit grumpy at times.

Daddy said that he did something wrong on the blog and we couldnt read the messages everyone was leaving but he fixed it now. Sorry I didn't get back to you guys but from now on we will.

Well better get back to bed.

Lots of love Jana xxxx

lets get this tube out !!!!

Well I am really excited..... Mum and Dad have signed up for a special program called no tube in Austria and hopefully next week we will be doing alot of coaching over the net. We are just waiting for the final approval from my Doctors at Fremantle and we start.

What will happen is Mummy will get a big blanket on the floor and put all different types of food on it and we spend all day just playing with it. I get to try each taste and then after a few days we will take the tube out and try some solids. I have to be a good girl and eat otherwise I will get really hungry. But because I don't eat solids and only get tube fed Mummy says that I don't know what it is like to be hungry.

I think it will be good fun and it takes about 3 weeks. Mummy and Daddy are really proud of me and they think I will have a good chance of getting off this tube for good. Then I won't have to have that horrible tape on my face that gives me a nasty rash and that tube is so uncomfortable going down my throat.

I'm ready to eat !!!

Also some really exciting news Mum and Dad have organised a fundraiser lunch for me at Dad's golf course in April. This is to help me on my tube weaning and ABR and all the special things me and Mum do during the week. So far we have some great prizes and stuff to auction off and everyone has been great with their help. Mum is going to get the invites out in 3 weeks time and it is going to be a great day.

On a very sad note though we lost one of our friends Emma last week and we send all our love to her Mum and Dad and family. xxxxx

a new toof....its not fun being sick.

Hi everyone...

well this week I have been a bit sick. Last Sunday when we drove up to Butler in the 43 degrees I started to cry because my tooth hurt. One of my canine teef started to come through so all week I had no sleep. Then to make it worse I got a stomach bug and was pooing all day.....and all week !

We went to Doctor Nelson and he makes me drink this stuff like cordial which makes me feel better but because I was sick I couldnt go to childcare and see my friends. Then on Thurday my canine toof finally came thru so that makes 13 teef... Mum and Dad are a bit tired because I keep them up all night

Good news though because Daddy is on holidays for a week to sand and paint upstairs and the roof. I have to move downstairs on Sunday while Daddy paints my roof in my room....he said it will be smelly for a while.

Mummy and Daddy have registered with a place in Graz Austria to help me get rid of this feeding tube. Hopefully we can do it via something called "netcoaching" otherwise we have to fly all the way over to Austria. We go and see my doctor Ian soon to see if he can help as well....it should be really good fun to eat real food as it looks so nice when Mum and Dad eat dinner..

Mummy has started to plan a big fundraiser for me to raise money for my treatments. she said it will be a big dinner at Daddys golf club in April and all her friends are helping her...i cant wait.

ok i gotta go as Daddy is feeding me

love Jana xx

gee its hot !!!!

Hi everyone,
well this week we had lots of fun again with mummy during the day and she gave me lots of excercises to do and ABR. She sometimes wears me out and I have a big sleep at lunchtime. Childcare was good but I got a little grumpy when they didnt cuddle me all the time and mummy said I am going through a clingy stage !! I'm not sure what that means but I love people cuddling me.
When Daddy gets home somedays we jump in the spa and he gives me lots of stuff to do. Every now and then i forget to hold my head up and my whole face goes under the water. This makes me a little mad and I usually tell Daddy off. I love jumping and kicking in the spa and splashing water all over Mum and Dad. When I have a shower after the spa Daddy has taught me a new trick where I put my face right under the shower and close my mouth so no water gets in. I used to hate water on my face but now I think it is great and I laugh alot when Daddy puts my face under the water.
Well we have to go soon for a drive all the way to Butler and Dad said some thing about packing a lunch and a waterbag because it is so far away and its going to be 41 degrees. Hope Dad cranks u the aircon nice and hi. I have put some photos of xmas on here,

OK bye and talk to you all soon.

Love Jana xxx

Hi everyone I'm here.

well hi everyone... I think Daddy finally got his stuff together and has nearly got my site going.

He still isn't sure how it all works but he will figure it out.

Well this week Daddy went back to work and me and Mum got back into our routine of lots of ABR excercise , standing up , going to childcare and of course I had to chuck up a bit over Mum... my tube kept on coming out and I think Mum and Dad are getting tired of putting it back in. Me personnally I don't like it and one day soon I will learn how to eat again. My Mum and Dad have really nice food and it tastes good but as soon as I try to swallow it I chuck up and choke. I heard them say the other day they might try something in Austria at Graz to help me get off this nasal tube... we go to Switzerland in May to see my Nanna Margrit and all my Aunties and relatives I havent met yet.

OK well it was good to talk to you and hopefully we can tell some funny stories next week.

Bye Bye.