Circular Quay and Luna Park

The boys were so excited to get on the plane and go to Sydney. That was until we started walking onto the plane. Kobe then decided that going on the plane for the first time was a little bit scary with the noise of the engines.

Once we took off he settled down, and was happy to read his Wiggles magazine, listen to music on the headphones, colour in and play with Aaron's ipod touch.

We were so happy to arrive in Sydney and see beautiful blue skies - not like the last time we were up there! The boys love the flat escalators. Jalen kept saying 'Sydney is so high tech!'.


Our awesome driver was there ready and waiting for us.

I was freaking out as a plane flew right over the top of us - not something that you see every day in Tassie!

We headed straight to the harbour and went for a walk to Circular Quay. The boys were so excited and Harri kept saying 'I can see the Sydney Opera Bridge!!!'.

The boys loved playing on the Opera House steps. Jalen kept going up and touching it saying 'it's real tiles!'.



There were so many things to see along Circular Quay. There were so many tourists around. This guy was getting a lot of interest as he was busking.

We sat down and watched him for a little while.

Jay was begging us to take them to Luna Park, so we decided to catch a ferry over to check it out for a hour or two.

Kobe absolutely loved the ferry (and his ice cream!) and kept on pretending he was rowing the boat and wanted us to sing 'row, row, row your boat'.

It was a short trip, but so amazing with the beautiful views and the sun setting at the same time.

It was just starting to get dark as we got to Luna Park and it looked so beautiful with all it's lights on.

The park is very small and is just an old fashioned theme park, but we had so much fun. We ended up staying a lot longer than the 1-2 hours that we thought we would. Over 4 1/2 hours later we left at 10 pm with some very tired, but happy boys.


We loved the dodgem cars as we could all go on at the same time. The park wasn't busy at all, but the dodgems had the biggest line up.


Harri was too scared to go on the bigger rides - especially after we got him on the little roller coaster and he came off screaming and crying! He refused to go on the ferris wheel, so Jay, Chrish, Kobe and I went on together. BIG mistake! I was petrified!! It was so high and you could see over the whole Sydney Harbour and Luna Park which was beautiful IF I could've relaxed to enjoy it. The carriage was swinging around in the wind and I was trying with all my might to not sound panic as I kept saying I just wanted to get off. I copied all of Chrish's photos and just found this one. It cracks me up as I'm squeezing Kobe's leg as I'm so scared, but trying to be brave, so I don't start freaking him out too! Check out my nervous grin!

Kobe in the meantime was happy to sit and enjoy the view.

The other ride that I absolutely hated was the giant swings. Jay loved it and went on it over and over again, so I thought that it would be fun to go on with him and Aaron, while Chrish watched Harri and Kobe. Oh it was so bad. I was freaking out, thinking the swing was going to break and it didn't help that Aaron was right next to me saying 'oh boy, wouldn't it be awful if the swing broke and flew right into the harbour!?', just to stir me up more!

Harri and I both loved the carousel. It was great as there was never a line up, so we could just jump off and straight back on again.


The boys loved the 'Coney Island' section which had some really cool steep slides and old fashioned fun like a mirror maze. When you walk through you can see the silhouettes of people, so Jay had lots of fun standing behind the screen doing stupid dance moves. The people below were watching him for ages, laughing at his ballet moves.



Chrish looked after Harri and Kobe a lot for us, so Aaron and I could go on rides together. One of our favourites was the 'Tango Train' which was really fast and fun. The funniest thing about the ride though, was one of the guys who worked on it. He was a bit of a nerd, but did these hilarious dance moves the whole time. Every time you would wizz past him he was doing some new cool dance moves to go with the lyrics to the songs, and was cracking everyone up.

Chrish kept the boys entertained while we were riding, or maybe I should say he tortured them...freaking poor Kobe out with all the scary people dressed up! He was actually loving them when they were far away from him, but wasn't so keen once they were up close.



I was amazed that Kobe lasted so long without getting too tired. We left at 10 pm and were blown away again by the amazing views as we walked to Chrish's car. While I was on one of the rides I was thinking about how the week before we were having a talk with Noah's doctor about 'what if' and 'just in case', and here we were almost two weeks later, in Sydney having the time of our lives. I would've loved to have had Noah with us and I really missed him, but it was nice to know that although he was in hospital he was so much better and was with Mum and was being well looked after. It was nice to be able to have so much fun with the boys, especially after the last couple of weeks we have had.

Fun in Sydney

We arrived safely in Sydney yesterday afternoon and had a very busy and fun afternoon and night with Chrish, checking out Circular Quay and then catching a ferry over to Luna Park where we spent around four hours having a great time. We left at 10 pm with some very tired, but happy boys.

We spoke to Mum last night who said Noah had a great day and was really happy and alert all day which is nice to hear. I'm missing him but enjoying the time with the three boys. Kobe saw a photo of Noah this morning at Chrish's house and put his hands up in the air like 'where's Noah!?'.

We are off for another busy day at the temple, the footy (Sydney V Hawks), which should be interesting as we are used to being in a crowd of Hawthorn supporters, rather than being the minority, and will then do something else afterwards, before heading home in the morning.

Taking a Break

It's day 10 now with Noah in hospital and I'm really, really tired. I feel like a bit of a space cadet as you really do get in your own little world sitting in that tiny air conditioned room all day and the days, and hours just roll into one. After 4 nights sleeping up there in a row I'm feeling very sleep deprived after lots of broken sleep thanks to beeping IVs, the beeping feeding pump, nurses coming in every hour to do Noah's obs, nurses coming in to give him nebs during the night and his monitor beeping every time his heart rate or sats drops to a certain level.

At 7am I drag myself off the (not so) comfy sofa bed and past the nurses desk to jump in the shower before it starts getting too busy. The nurses always give me a cheery 'morning! How did you sleep!?' and my reply is usually 'not much' as they give me a smile. Noah's sats were dropping a lot yesterday so the physio who had seen him all week called in the head physio to come and take a look at him. She came armed with a bag that they used to give him an extra big breath every time he breathed in. They were hoping it was going to really expland his lungs and help clear his airways and bring on lots of coughing.

After two sessions of bagging and three sessions in total for the day Noah ended up having a really good night with him looking really bright and breathing easily.

He was so good this morning that they dropped down his oxygen to 2 litres, took away the cardiac monitor, and put him on a portable sats machine instead....this was this afternoon - now down to 1 litre of oxygen and saturating at 100%!!

Every night after school the boys love it when Aaron walks in after work. They all run to him yelling 'Daddy!!!' like they haven't seen him for days and give him a big hug.

Before Aaron takes the boys home for the night Jalen always goes over and give Noah a big kiss and checks out what his monitors say. He is always analysing what they say and if his levels drop too much he knows it isn't good.

It's been nice having visitors every day and today we had an extra special one...Alison just arrived back from the USA and popped in to see us.

On the days that Noah should be at school with the boys, the school has been letting Di come up to sit with Noah for a few hours to give me a break, so I can take Kobe home to have a sleep. Kobe isn't too keen on having a sleep when we get home - especially since he's been at the hospital or at Lisa's all week, and hasn't been having naps but when I wake him up to pick up the boys from school he cries as he's still tired and wants to sleep longer.

All of us are really tired, but Noah's paediatrician Dr B told me this morning that he expects that Noah will be in till around the middle of next week so we have a while to go yet, before things get back to normal. He did say he is much better, but they are concerned about the fluid that he still has and want to make sure that has all settled down before sending him home.

Last December we saw some cheap flights to Sydney and decided to book two nights away with the three boys. We decided last year, that every year we wanted to take the boys away on a special holiday without Noah so that we could just concentrate on them for a couple of days without having to worry about Noah and not being able to do certain things because of him. We booked tickets to Sydney and thought it would be fun to go up for a weekend with the three boys, to stay with Chrish, see the sites, go to the temple and also go to the football at the same time. Of course Noah always ends up getting sick when we have something big planned and the weekend we had booked to go was this weekend!

The boys have been looking forward to it all year, and we had roped Mum into looking after Noah at our house for the weekend. With him being in hospital I said to Aaron that it looked like it would just be him going with the boys, but as the week has gone on and Noah has gotten better we thought that maybe we could all still go and Mum could stay at the hospital with him for the weekend. I talked it over with the doctors and nurses and all of them agreed that Noah was a lot better and that we don't need to worry about him, and that he would be well looked after for the weekend. They all said it would be nice to go away with the boys and have a break together, so we talked it over and decided that we will still go.

So we have three very excited boys tonight, who can't wait to go to Sydney tomorrow to see Uncle Chrish and have some fun. I feel sad that we are leaving Noah, but know we couldn't do as much if he came with us and know that it's just too hard to travel with him like that now. I'm actually really glad that he is looking 'well' but still in hospital, as I know he will be well cared for by Mum and the doctors and nurses, and it will be nice for Mum to have them do all the medical care and feeds etc while she just spends time with him.

I just hope he behaves himself for them all - not like he was at 5.30 this morning - wide awake and ready to party- little monkey! We leave tomorrow at lunch time and get back Sunday at lunch time, so it's only a day and a half in Sydney, but I'm sure we will have lots of fun before we head back to hospital again.

Slow Going

Noah is getting better....very slowly. It seems like he gets better for a few hours and looks really bright and alert and is breathing easy, and then a few hours later he goes downhill and his sats drop again and he's not as comfortable. Yesterday we got him out of bed and up in his wheelchair for a couple of hours which really helped his chest a lot.

He got tired after a while though, so we put him back into bed. Yesterday they did another Xray using a portable Xray machine which they brought to his room. Today one of the doctors said that it looks like the infection is clearing but because Noah has fluid all over his body with all the swelling going on, he also has fluid on his lungs which is why his chest doesn't seem to be much better yet. She said once the fluid starts going everywhere, it should also start clearing from his chest.

While he was up in his chair he had so many seizures in a row - probably around 15-20. He has never had that many before in a row...he was coming out of one, then going straight back into it again and it just kept going on and on. The Drs started to worry that he would end up in a state of status epilpticus, and after his second lot of cluster seizures they decided to give him a loading dose of IV epilim and also increase his daily dose of epilim up to 800 mg twice a day which is a lot more than he was having. Once the IV epilim kicked in he really calmed down and was quite drowsy. It settled the seizures down, but he still had a few in the night while he was sleeping.

His afternoon/evening nurse was great. He is a very funny guy and always comes in and calls Noah 'little dude' and tells him off for misbehaving. About 9.30 pm he popped his head around the door with this on!

He's very funny and was telling me how he was one of the 'clown doctors' (or clown nurse in his case!) and had a ceremony and all to get his nose. I told him he was going to scare all the kids, but luckily most of them were asleep, so we were the only ones he had to entertain for the night. This was his pose doing 'nursey things' for my photo.

Kobe spent the morning with me at the hospital today and has been so good. He is quite happy to just sit and chat and watch the Wiggles all morning.

He loves it when the nurses, Drs and physios come in and out. He loved imitating the physio giving Noah's 'percussion and vibes' to help clear his chest and kept saying 'bang, bang!' and she was tapping on Noah's chest.

When Noah was settled, we ducked into the playroom for a quick play to break up the morning.

I wish they had the playground years ago when we were in and out of hospital a lot when Harri was little. It's nice to know that the boys now have somewhere fun to play when Noah is in.


It's been over a week now since we've been in and the days are starting to roll into one. I'm having to ask what day it is as I try to work out what the boys should be doing at school etc. It's been nice having lots of visitors drop in. This one obviously has his serious doctor face on :)

I'm glad we have a nice room (even though it's very cramped) where we can look outside to the courtyard. I didn't get out of the hospital at all on Monday and had no clue what the weather was even like, but it was nice to watch the rain come down this morning.

Flooding the Ward

Last night while Aaron and I finally got some quiet time together, a nurse brought Kobe into Noah's room to show us what he had been up to. He was TOTALLY drenched as he had been having quite a bit of fun in the boys bathroom up the hall. He had grabbed heaps of toilet paper, put it in the sink to clog up the drain and then turned the taps on, so that the whole bathroom was flooded out!! So much for assuming that he was in the playroom with the other two boys.

The nurses actually thought it was very funny, and kept saying there is now way you could tell him off, as he was just too cute. They got him a hospital gown to wear, while they dried his clothes in the dryer.

He thought it was quite funny and kept twirling around, modeling it for us. Jalen had the nurses wetting themselves as he said ' I can see tomorrow's newspaper...Launceston General Hospital flooded out, 5 people injured'.

After the first few days of Noah picking up really fast, things have sort of hit a plateau. His potassium levels aren't going up as quickly as the Drs hoped, and he has a lot of fluid retention and is very puffy everywhere. His poor little feet look they are about to burst.

Dr Ben (you would like him Becky - great name, and lovely Dr :) came in and said that we have been in a lot longer than the 3-5 days they predicted in the beginning. I told him we have another week to break the record of 14 days and he said 'I'm betting you will break it'. Although Noah isn't as sick as he was, it's going to be a long trip till they get everything sorted out. I'm counting my blessings though...he is much better than he was, he is quite alert a lot of the day, we have our own room (even though it's tiny) which has a nice view of the courtyard, we are getting meals, Kobe is happy and well looked after (thanks so much Lisa), we have had lots of friends pop in to visit which breaks up the day, and the nurses and Drs have been great, and help to make the day go faster with their good care and sense of humor. Last night we had an awesome male nurse who is always making us laugh.

Hospital Routines

It usually takes a day or two to settle into a routine when Noah is in hospital, but after a couple of days it starts to just feel like our second home again. The boys don't seem to worry too much about Noah being sick, but care more about whose turn it is to push the buttons on the lift. They always end up in an argument as they try to work out who did it the time before, because as we know, pushing lift buttons is a matter of life or death and results in tears if it's not your turn! ;)

Whoever misses out on pressing the buttons in the lift, get the big privilege of pressing the button to be let into the ward.

Whenever the boys get here they come in to see Noah first and whoever has been with him (Aaron and I are taking turns). It seems like every time they come back there are more and more leads and tubes, hooked up to his body. It actually looks worse than it really is, except for the awful blister on his arm from his first IV.

Kobe is always the most excited to see him and wants to always say hi and see how he is. Yesterday he spotted the stethoscope and knew exactly what to do with it. I'm hoping that one day he will be my rich Dr son who will look after us when we are old! ;)

Since the last time we went to the football and got the boys some hot chocolates to warm up, Harri has wanted to get hot drinks with lids on them. He LOVES that you can make a milo on the ward and have a lid, so without fail the first thing he wants is for us to make him a milo so he can drink it with the lid on. The other day there were no lids and Harri was horrified and decided he didn't really want a milo then (as they of course taste different when you are drinking through a lid! ;).

Last night was my turn to stay at the hospital with Noah and it was so nice as he was wide awake all night and really settled. I jumped into bed with him and we were quite happy for a couple hours having a cuddle while the nurses came in and out giving him his meds, feeds, puffers and nebs. I told our nurse I wouldn't mind her coming home to live with us so she could do that for us every night.

I wouldn't mind staying in Noah's bed all night as it is a lot more comfortable than the little sofa bed that I have to sleep on, but it's a lot better than the recliners we used to have to use.

We have hinted at the nurses that we need a bigger room up the hall, but they keep coming up with excuses like we need to be close to the nurses desk. One of the nurses did suggest that they built a 'new wing' across the road just for Noah which looks pretty flash. I wouldn't mind staying in there.

Each weekday morning Lisa and Eden have been picking up Kobe for a play. He loves it and gets so excited when I ask him if he wants to go with Eden. He then imitates going in their car like he is driving and makes revving sounds. I ask him if that is how Lisa drives and he says yes, and I'm a bit concerned now about letting him go! ;) It's nice to know he's having so much fun. He's probably going to be sad when Noah is out of hospital. This morning they were having a little groove together to the Wiggles before they left.

We are going to be here until the weekend as Noah's potassium levels are now too low from all the ventolin he has been having. This means his heart rate is too low, so he is getting IV potassium to bring the levels up, and is still on 6 litres of humidified oxygen. He is also really puffy all over and has a lot of fluid that he needs to get rid of, so we are settling in for another week of the hospital routines.

Looking Good

Noah is looking really good today. When we went to visit he was wide awake and alert, and even gave me a little smile when I stretched his arms up for him.

His sats are sitting at around 98-100% on 7 litres of oxygen (after scaring the nurses during the night when they dropped a little and they started cranking it up again - we had to remind them of his sleep study results a couple of months ago, and let them know that is quite normal) so it looks like we get to try to wean him off it a bit more today.

Now they have to try to work out why his heart rate is lower than it should be. It's better than being at 160 like it was, but it's not where it should be.