merry christmas

Hi all,

Jana has been an absolute champion the last 3 x weeks. She has been eating well and as happy as larry , and at childcare she has been doing some amazing paintings. She does them all unassisted which amazes me and they have all the kids crowding around her as she is the star of the class.

We have a busy patch coming up with xmas at our house this year plus Verena's nephew is staying with us. On boxing day we are having the sausage sizzle for the Biorehab for kids charity so a 6am start to pickup everything them finish at 5pm. Got plenty of helpers so will be a good day.

The biorehab for kids charity which pays for the Perth ABR Clinic costs got a much needed injection with a Telethon Grant which will see us through for at least another two years. That was such a relief as it was getting to a stressful stage as the money was running out fast.

Not much happening for the rest of christmas just spending lots of time with Jana and Verena and I'd say lots of beach. We took Jana to the beach a few times last year and she loves the water. The colder the better for her , she giggles her head off when you drop her in the cold water.

well hope you all have a great xmas and stay safe.

all the best from Paul , Verena and Jana. xx

been a while

Hi

Apologies for not blogging for a while it seems life got busy again... Jana has been going really well with her drinking. We now have a special cup that is cut out to go around her nose and she drinks on a good day 400 mls of thickened water. Her eating is good but still something upsetting her and sometimes she doesnt eat her meals. I think her 3 year old molars are moving early.

Jana and her Mum have been going to Hydrotherapy every week and Jana loves it. We also chuck her in the spa when we get the chance but it is a bit small to do much. She is still doing conductive education and now we are trying to potty train her which is not so much fun. She loves her childcare and they are so great there with the extra things they do for Jana, we really are lucky to have her in this childcare. She comes home buggered and is asleep by 6.30pm.

Biorehab for kids has the sausage sizzle on the 26th - boxing day at Melville Bunnings so we should raise some good money towards the ABR clinics. We also got a spot on the 29th Jan so a double bonus.

Well better go . Jana says hi to everyone.

Paul

all better

Hi

My teeth are all through now and no more pain. The last 2 x days Mum has used a styrofoam cup with a cutout in it for my nose and she gets me to drink from that. Guess what I love it.... finally we found something that I can use to drink from that doesn't scare me. I have been drinking up to 300mm a day which means definately no more tube if I keep it up.

Becuase my teeth don't hurt anymore I am eating really well again and trying all sorts of different food. It is amazing how well I eat now after the "no tube program" mum and Dad did with me via Austria. I also do ABR every day and don't complain anymore. I just watch the Wiggles while Mum works on my back. At night I use the machine all night and now I have a big bed it is so easy. Mum or Dad usually end up sleeping in my bed now when I wake up as it is so comfy......

Soon we all go to Queensland as Dad has a conference to go to so we go too. We are staying at the Gold Coast and Mum and I are going to go to Seaworld and also go shopping. Can't wait it should be fun.

Ok better go. Lots of luv

Jana

Hi

Well this week we went to hydrotherapy again and I am loving it....we get to splash around and do excercises.
I am now in the toddlers room at childcare and this week I spent the whole day with the toddlers. Now I am with the big kids I have to do more things which is fun. I am slowly getting better after my last big tooth came through. It still really hurts and every day I get alot of pain from them.
Mum and Dad were excited becuase Mum's Bad Egg shirts got on the footy show the other night. Sam Newman wore our shirt on the show the last two weeks. Dad sent some shirts to him and he was good and wore them on the show. It was great !! I sent him a thankyou letter.
This weekend I spend alot of time at Nanna's which should be fun and Mum and Dad go out and relax. I have my tube back in for a few days again just to get some water into me as while my tooth hurts I don't drink at all and can't do poo's. Hopefully soon I will start to drink again.

Ok well we will see you next week.

Luv Jana xx

my own big bed

hi everyone,

sorry it's been so long but I've had more teeth coming through and been very grumpy for a month now. These last two big teeth just keep coming and then I got an ear infection (in both ears!)

Well for the last 5 months I haven't been sleeping very well and usually end up in Mum and Dad's bed because it is nice and warm. Yesterday we got my new big bed delivered and Daddy set it all up and took my cot to pieces. I went shopping with Mum on Saturday and I picked out the Dora the explorer bed linen. My first sleep was good but I still woke up half way through the night so Dad stayed with me for a few hours then Mum jumped in my bed for a few hours until I woke up this morning.

Hopefully this means I can get back on the ABR machine at night as I have been naughty and not getting much machine time.

On the weekend we went for a walk through Wireless Hill Park and looked at the wildflowers then jumped in the spa and did some hydrotherapy. Mum takes me every week not to the Centre for Cerebral Palsy and we go into the pool for hydrotherapy there as well. I love the water.

Thats it for this week.

Luv Jana xx

just one last tooth.....

Hi everyone,

Well this week I have been in alot of pain from my last tooth and it is driving me crazy. It is a big one too and once this one is through I will be sleeping like a baby. I have been keeping Mum and Dad up all night and I can't get on my ABR machine at the moment.

I haven't been drinking much water either so Mum gives me mandarins to suck on and I get all the juice out of two mandarins at a time. My eating is still good and I even have solid food twice a day as well as my pureed fruit and vegies mixed with yoghurt.

Dad has been working alot on the house and has built a great backyard for me to play in. We now have a pergola to keep the sun off and the fish pond has been moved to give me more room. The spa is back running again so this weekend we start hydrotherapy again. It's a bit cold to do it at the moment at night so Sunday afternoons sound good to me.

This Saturday night we have Nanna and Gwen coming over and Dean and Seiko bring little Hikaru over. She is only 5 months old and very cute. Mum is going to cook a traditional Swiss fondue but I will be asleep so I won't get to taste it. Hopefully today I can be happy enough to go to childcare as I had a bad fever last night from my tooth. They have put me in with the big kids now and we have a great time.

OK next time we talk I will be happier as my tooth will be through.

Love Jana. xx

happy birthday jana

Happy birthday to me , happy birthday to me.

Two years old today , woohoo. We are having a party tonight and hopefully I get lots of great presents and yummy food.

I have been such a good girl this week and back to sleeping in my own bed after our long trip to Switzerland. I am back on the ABR machine at night and mummy is giving me the manual excercises as well to make me strong.

My last tooth is coming through soon and then thats it for a few years , gee I am sick of having sore teeth. Off to childcare today and they said I have grown up while I was away and they all missed me very much.

Bye

Luv Jana

Switzerland Holiday

Hi

Well we are all back from Switzerland and we had a great time.

Mum , Dad and me flew to Dubai and I slept the whole way on Dad's chest as it was bumpy and then we went from there to Zurich. We caught a train to Nanna's farm and met all my relatives I haven't seen yet. They all agreed I am very cute !

We then went to a small town called Zermat which is in the alps and on the way there we took a short cut which meant we had to drive our car onto a train and go through a big tunnel through the mountains. We stayed in the car and it was pitch black. When we got to Zermat the next day we went to Gornergracht and had lunch at 3200m high overlooking the Materhorn. We were there for 3 hours and Dad and I got sunburnt from the snow. Dad's whole face peeled off haha..

We also went for 3 x days to Germany to a town called Fussen and we visited the Nueswanstein Castle. It was amazing to see and the walk back from the castle down the hill was exciting in the pram !! My Aunty Margrit and Uncle Martin took us out for lunch in a castle on a balcony hanging over a cliff which overlooked the Rhein river then we went to the Rhein Falls which is a huge waterfall.

Then my tooth started to play up and I didn't eat for 5 days. It is my second last tooth and a big one. It was so sore Mum and Dad had to put my tube back in for a few days to get some water into me but after a week I came good and was a princess for the rest of the trip.

We went for lots of walks and day trips visiting people and then went to France to the Alsace region where they make wine.We stayed in Frances most beautiful village in a house that was 400 years old. The floor was very creaky and it looked right down the main town square. It was so cool of a place we loved it. Mum and Dad ate alot and loved the wine. I ate whatever Mum and Dad ate , oh I forgot to tell you I now love eating solid food and whenever Mum or Dad doesn't give me some food I get really cranky at them. Dad said I am a bit of a pig now when it comes to food!!

We then went back to Nanna's farm and had a farewell party with Tesi,Peter,Sasha and Mums friends and family at Ur's patio. We got the barbie going and Dad cooked up alot of meat and Aunty Elisabeth and Nanna did the salds. I stayed up until 11pm as I am now a party girl...

We said our goodbyes which was very sad and flew off to Dubai for a days stopover. When we got there we caught up with cousin Wayne and had a swim at the pool. Dad went off for a Desert Safari and got home that night then we flew off to Perth. I didn't cry the whole way back and was a good girl. We then got home and Nugget the cat was there waiting for us , he is fat now as everyone was feeding him lots.

Now we are home and I have to get used to sleeping at Perth time and getting back into the ABR machine and excercises. I am eating really well now and love my food , I so don't miss the tube.

Good to talk to you guys again and will let you know this weeks adventure soon.

Love Jana xxxx

holiday and tube gone .....

Hi

Well after the fundraiser we went to Margaret River for the long weekend. I cried for the whole trip down there and Daddy was pretty stressed by the time we got there. But I was such a good girl after that , I had some pretty big teeth coming thru so thats why I was grumpy.

We had a great time and Mum and Dad took me to some Wineries and nice places along the beach. It was our first trip for over a year and I had so much fun. When we got back I was bit sick from all the teething so Mum had to put the tube back until I got better. Now I am all good again and we chucked the tube out for good now.....

It's mothers day tomorrow and Dad and I went shopping this morning for a present for Mummy. We got her some great things and also a present for Nanna.

I am eating so much now I can't believe I didn't like food and I even get really upset when I am hungry. Today I drank a whole bottle of water which Mum thickens for me and gives it to me with a spoon. Once I drink well we can definately throw that tube out wooowooo.

Only two weeks now until we visit my other Nanna in Switzerland and my Uncle and Aunties. I can't wait it should be great!!!

Ok I have to go and have a shower with Daddy and off to bed.

Goodnight love Jana xxx

what a great day

Hi everyone

Well we had such a great day at my fundraiser on the 18th April. We had 160 guests for a beautiful luncheon at Seaview Golf Club , the weather was awesome and the place looked so good with the view over the ocean.Mum and Dad spent alot of time getting everything ready but they said they loved it. It really looked great.

We had Adrian Barich from the Eagles / channel seven as the MC and he did such a fantastic job and was very funny. Daddy had organised an auctioneer called "tiny" Holly and he and Peter and his wife from Starworld framing did such a good job off selling all the stuff for me.We had Geelong,Eagles,Dockers,Collingwood jumpers , a guitar from the rolling stones and even Sir Richard Branson signed a shirt just for me when he landed his helicopter at Seaview a few weeks ago. Roger Federer signed a picture for me and we got alot of other stuff donated.People were so generous.
Tiny was so funny everyone was in hysterics. Daddy made a very touching slideshow to music which made everyone cry as it showed everyone how strong I have been the last two years.
The food was so nice and the chefs from Challenger TAFE served all 160 meals in just 12 minutes from Seaviews tiny kitchen.Mum and Dad were amazed at how they did it.
Once everyone met me they all donated their time even the 12 chefs and kitchenhands,waiters,Adrian Barich and Starworld framing. I was so happy all day and I didn't even have a sleep.
Anyway everyone had such a great time we all watched the sunset which was the best for months and Mum and Dad said they ordered that one just for me...
Some people came up to Mum and Dad and said it was the best function they had ever been to and we raised alot of money for my ABR and other treatments.

Lots of love Jana

big weekend coming up.

Hi everyone,

sorry I took so long to get back to you but we've been busy. Last week we had the ABR trainers over in Perth so we spent all weekend learning new exercises. I was a good girl most of the time but got pretty tired by the end of the day and cried a bit. I have lots of new teeth coming thru again so it hurts alot.

Mum and Dad had to put my tube back in just to give me water but I still love to eat. Hopefully we can take it out again this week as I have been so good with my food I am starting to drink little bits of water but from a spoon. The doctors in Austria will tell Mum what to do tonight and hopefully we can whip this tube out once and forall.

My big fundraising lunch at Dad's golf club is on theis Sunday and we have 160 people coming. I am really excited and Mum and Dad have been working flat out for 3 months on this day so hopefully we can raise lots of money to help me get ABR and other treatments.

Ok well I will let you know how we go next week

Love Jana.

xxxxx

tubes gone wooooowooooo

guess what my tube is out and I'm eating like a little piggy.....

after 5 weeks of tube weaning we finally got rid of the tube. I still have to drink better but every day I enjoy mummy's magic water (thickened water with cordial) and yesterday drank 200ml.

every day I eat 5 times and now I get grumpy when I don't get fed !!! we even went to Sweetlips for fish and chips last night and I ate a whole chip on my own plus my normal food.

love Jana xx

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yummy yummy

well we are in week 5 of the tube weaning from Austria and I am now pigging out. Yesterday I had 5 x big tubs of food and even had some icecream with Mum and Dad at the beach in Rockingham. We went for a big drive and then walked all along the beach and had lots of fun.

I still don't like to drink water yet so Mummy says the tube stays until I start to drink. I have to learn how to swallow the water but I'm nearly there.

Mum is still working hard organising our lunch we are having at Seaview and we even got Sir Richard Branson to sign a shirt for me to auction when he landed his helicopter at Dad's golf club. We have shirts from Collingwood , Geelong , Dockers and Eagles all signed for me and Mummy even got Roger Federer to sign a picture for me (coz he's Swiss too !!)

Well hopefully by next blog I will be drinking then we can take the tube out.... wooowooo


Love Jana xxxx

hey this food is alright

well for the last 3 weeks Mum and Dad have been emailing the Doctors in Austria and they tell us what we should do to make food fun for me....

Finally I have realised that this food stuff tastes good and is better than milk. I still don't like drinking water which is the next step for me to learn.

Mum and Dad have been working really really hard organising my fundraiser and they said it sold out in one week.... wow looks like everyone loves me... wooowooo.

Well sorry this is so short but I have to go and eat some more food coz I'm starving !!!

Love Jana xxxxx

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.