Monday, December 29, 2008

Christmas and the last couple of months

In November Ethan took part in Aunty Mons wedding. The lead up was long and I wasn't sure if he would do it. One minute he was excited and the next he was over the fuss and was saying he wasn't going to take part in the stupid wedding! The day came and he was great. He was very well behaved and neat all day. My only concern was the photos, he loves to pull faces but we managed some great shots and the day was enjoyed by all.

The last few weeks of school were a nightmare. Ethan struggled and the school made quite a lot of phone calls to me. Ethan was struggling but not the usual physical exhaustion he was having trouble concentrating. The lights were on but nobody's home sort of stuff and he was very precious. He was asking to come home a lot and for the school nurse. His oxygen saturations were good but nurse Heather noticed his heart rate was jumping up and down. It wasn't long before he had a 24 hour cardiac monitor on, a follow up cardiac appointment and a walking test. The outcome being we can't do anything about the heart rate stuff, or the vagueness. This is hard to deal with. If he is struggling physically we can take over but we can't think for him. I hope this doesn't get worse. Sometimes he is on the ball and at other times he is as dopey as they come. The walking test was him walking as fast as he can for 6 minutes. He managed 235 meters. Pretty poor but before sildenafil he couldn't do that!

He also had a respiratory appointment to see what they thought. The chest x ray was the best ever! A heart the size of pharlaps and some clips from heart surgery but the lungs were clear. This was a shock I've never heard those words!! Dr David questioned whether his vagueness is from lack of sleep. He takes forever to fall asleep and is constantly up during the night and then I have to wake him bright and early for the bus. So he is on a sleep chart for 2 weeks. Not the best 2 weeks, he has had late nights non stop and hasn't been to bed at bed time once!!

Ethan's school report surprised me. I had to read it aloud to Luke to see if I was reading it right. Ethan sings the national anthem and the Glenallen school song at the primary school assembly in front of everyone. He is very confident when he's not vague! He is also very confident in the pool apparently..

Ethan is mad about cricket at the moment. He is always wanting to play in the backyard. Lucky for me the girls also like playing so once I've bowled them out and smashed them for 6 I can come back inside and leave them to it!! He is also right into football. The once devoted Kangaroo supporter seems to have jumped ship a few times and is flying the Bombers flag. He loves singing the team songs.

Suited up

More suits

The fam all scrubbed up

Skater boy

Kids happy the tree is now decorated

The Millenium Falcon

Lightsaber kit

Taking out Adam with the new lightsaber

At Nana Hanna's with new cousin Thomas on Christmas Night

Tuesday, October 28, 2008

The last 2 months

So much has happened over the last 2 months trying to remember it all will be hard.

EastLink: Everybody knows Ethan has a deep fascination with EastLink. He watches the making of EastLink DVD on repeat, he reinacts travelling on EastLink in his play, he has posters and pictures etc. Seeing his reaction to having a personalised tour of EastLink was amazing. He rode in the emergency response vehicle in both directions through the tunnels and over bridges before heading to the control centre. The team organised it very well, altering speed limits and blocking lanes while he was on the road and then allowing Eth to do the same when he was in the control centre. He had a great day. We would like to thank Glenallen and ConnectEast for organising the wonderful suprise.

School Camp: Ethan was also able to attend school camp. Jennifer and the staff at Glenallen took the class to Rosebud for 3 nights. They did lots of fun things but the most exciting thing for Ethan was the ferry trip to Queenscliffe. He was very excited that the boat could take cars on it. He had a great time being away but I struggled. I felt extremely gulity that I was relaxing and enjoying the break. Ethan has been away before but always at the same time as the girls. So having them home and Ethan not around was a reminder of how its going to end up. Very hard few days.

Respiratory Appointment: All went well at Ethan's follow up respiratory appointment. It's the best David has seen and we are going to try and reduce antibiotic cover and asthma medication over the summer months. With saying that Ethan was very disappointed he wasn't being admitted. Ethan has only just started coughing today. 2 months after his last admission; thats the longest dry period for years!

GP: When all is going well something has to pop up. Ethan had a major plantar wart on his foot. He couldn't walk. It was decided (after many discussions) despite poor circulation and the high risk of infection the GP would have to burn it off. It's been a while since I had to physically restrain Eth for a medical procedure and for a little weed he can be quite strong for about a minute until he's blue and looks like he's going to pass out. The bulk of it has gone but we have to go back and do it all again!

Cardiac: Ethan had his cardiac appointment last week. This is the first one since starting on the diuretics and increasing the sildenafil dose. The cardiologists were very pleased. Their "educated guess work" had paid off. They were extremely happy to hear the cyanotic episodes and chest pain had eased a lot especially during meals (meaning he can now eat without constant chest pain) He has put on a little bit of weight and is holding his own luckily. The dietician at monash will follow this more closely when we have our next tune up but it looks like he won't be needing a tube. They are planning follow up appointments with the cardiologist at monash when Ethan is admitted for his chest tune ups and with them again in a year. When questioned about whether that meant he'd be fine for a year with no deterioration they said they couldn't say. "We can't give time frames, today he is good and if he does deteriorate come back earlier". Ethan was even more disappointed he wasn't allowed to stay. He asked Geoff he could sleep in the new hospital for his 10th birthday, that was after yelling "wake up Geoff" and killing him with his light sabre!

Australian Hearing: Ethan had his hearing tested today. There has been no change since July. So at this stage there is no need for a hearing aid on the right side but we do have to make an appointment with the ENT surgeon to have a look in his ears.

Camp Quality: All of the kids got to go on junior camp last weekend. They did a lot of activities including fishing, going on puffing billy, seeing the Thomas show, Music shows, trampolining, flying fox, ball games. You name it they did it. When we arrived to pick them up Ethan pretended he didn't see us as it was nearly his turn on the trampoline! He had heaps of energy all weekend which was great to hear. All of the kids had an amazing time and have cried many tears as they miss their camp buddies!!

Photos to come.....

Thursday, August 28, 2008

Day 400

Ethan will be coming home tomorrow after a very ordinary admission. I have done nothing but complain and whine for the last 2 weeks. We have had a lot of issues regarding bed time. I think he waves us of happily so he can get up and play. He has the staff wrapped around his little finger and gets away with murder even at midnight! We have also had major issues with his diet. Ethan is on a high calorie, thickened fluid diet as he has weight issues and aspiration issues so when the wrong meals come that have skinny everything and drinks that aren't thickened I get pretty pissed. I had nurses, food monitors, dieticians, PSA's, doctors and the charge nurse all involved in my anger!! Not sure if I'll ever get reemployed there!!! These issues come at a time when Ethan is at an all time low with his weight to age ratio. We have strict guidelines to follow to facilitate weight gain. If it doesn't go our way he will need to have a nasogastric tube inserted and supplements given either continuously overnight or top up feeds during the day.

Tomorrow is Ethan's 400th inpatient day. No wonder he is so confident there! Just as important it is Erin and Adele's 400th day too. They have had a horrible 2 weeks and both of them are out of sorts. I have warned them about Ethans weight. Adele is not too fussed, knows about the tube, has seen photos of Ethan with one from chemo days but is pretty laid back. Ez on the other hand is terrified. She can remember seeing it in his nose and out is mouth during episodes of vomiting after chemo, and me sitting on him to put it back in etc. Hopefully we can get him to eat lots of fatty stuff and it's not needed.

Monday, August 25, 2008

August Ceftriaxone

Ethan was admitted to Monash last Monday for a chest tune up. This includes the usual IV antibiotics and physio. We were hoping it would be for a week and we would be home today but we are now looking at discharge on Friday. He settled in well and is running the place in true Ethan style. He is very comfortable there. He gives all the staff a high 5 goodnight and waves us off happily.

The IV came out today and had to be resited. He rode the bike into the treatment room, told the doctor how and where he would like the IV inserted and watched to make sure he was doing it properly. Not many 6 year olds would do that! He has also started doing his own medication. The nurses bring it in and he takes control putting in the IV bung and pushing it. He told me the other day he was going to be a nurse!! I'm not too sure what happened to driving the Ghan......

The physiotherapist has been using the vest during physio with good results. This takes some pressure of him when his heart doesn't allow him to participate.

Wednesday, July 16, 2008

the last 6 weeks

So much has happened in the last 6 weeks.

A couple of days after Ethan was discharged he was having the odd fever and was very blue and lethargic. I tried to speak to the respiratory doc, paediatrician, and cardiologist but they were all out of the office. I tossed up the idea of calling the respiratory docs mobile number (which i had stored in my mobile from a previous occassion) I didn't want to harrass him on a day off but I needed to speak to someone so I called. The receptionist should have said he was over seas not out of the office. 3am his time he still managed to organise scans and follow up at monash for us. I felt bad but atleast we got results that his chest wasn't any worse and we could continue on at home.

We were lucky enough to be given tickets to the V8 supercars at Sandown. We were even luckier to see pit lane, the garage, sit in the car, see the truck and get some merchandise. It was just like the pixar movie cars. Ethan loved it. In Dr David's words, "He is such a petrol head!" This was followed with Ethan and Adele attending junior camp. They both had a ball with the many activities organised for them. Ethan loved telling us about the bus trip there, the bridges and the new roads he went on! It was good to see them happy after spending a couple of tiring weeks at monash. We would like to thank Challenge for providing us with these great experiences.

Ethan has also been very excited as Eastlink has opened. After watching it progress every day on the bus he finally got to go on it. He doesn't stop talking about it, looking at posters of it and watching a DVD about it. Glenallen organised the posters and DVD as he wouldn't stop talking about it at school. In news group he would announce how many days to the opening etc. Glenallen are also organising for him to go in the Eastlink patrol vehicle and command centre. He knows all of the bridges and off ramps, he especially loves the monash/eastlink interchange. He plays eastlink on the posters (some are laminated) and makes the bridges with his train tracks. We have threatened to take his posters off him when he is naughty, he soon behaves!

During the school holidays we went to Mt Baw Baw for 4 days. We have wanted to go in the past but I've always opted to holiday in the sunny places as Ethan doesn't tolerate being cold and he manages to look even bluer than usual. I rugged him up like an eskimo and off we went. It is the first time Ethan has been quiet in the car, he went from blue to green! Luckily he didn't vomit just felt car sick. It is the first family holiday we've been on where Ethan has not become acutely unwell. Amazing!! The kids had a ball. Ethan didn't like the wind or the snow hitting his face but loved playing in the fresh snow while the sun was out. He loved tobogganing on the gentle slope but wasn't a fan of the faster hill or crashing! Overall he had a good few days.

Medically Ethan has had a few appointments.
Oncology appointment went well. All scans are clear. Dr Peter is happy with his progress and doesn't believe the cancer will come back.
Radiation oncology appointment also went well. There are no signs that the radiation has caused growth issues within his spine, or problems with his bowel and bladder, and it hasn't caused any other tumurs, all good.
Respiratory appointment went as good as it could. Ethan was in fine form asking Dr David to give him 5, in the city, pinch your titty! He was also showing off with the homer dance and calling everyone losers especially the medical students! Ethan is now rotating between augmentin duo and keflex. We need to go back in 2 months if we are not admitted before this. We left with the usual goodbye; see you on the ward in a few weeks. While we were at the respiratory appointment we saw physio. Narelle had managed to secure herself the new vest device so she hooked him up and away it went. The vest fills with air and shakes his chest making physio a lot easier and less strenuous. It was great. Ethan was nervous about it but soon realised it was fine. During our next admission we will get to play with it a bit more and if it doesn't interfer with cardiac blood flow we will hopefully trial one at home.
Ethan also had his Cardiac appointment. He had the usual scans and discussions and as a result the sildenafil has been increased and will get increased again in a week. We are doing this at home without monitoring so it's been a little scarey. So far so good. He has also started on 2 diuretics to help ease some puffiness and ease pressure from his heart. These seem to be helping at the moment.

Photos to follow

Sunday, June 08, 2008

Home again

The week of antibiotics turned in to 12 days. I should have realised a week was not enough as it is usually ten days at least. While Ethan was admitted they continued antibiotics and physiotherapy. Ethan is finding the physio sessions harder as his heart doesn't allow him to be as active. He had a major episode during physio where he went very cyanotic; extremely blue and very short of breath. It scared the hell out of the physio and the staff around. He usually stops prior to that happening. They are trying to get their hands on some new whizz bang thing which allows him to be passive but moves his chest and makes him cough but it all comes down to budget. The physiotherapists are great with him. He has a couple of favourites but he loves Narelle the best, "I love Narelle". Overall he enjoys physio but sometimes its a real battle especially if he is feeling a little off prior to starting. The plan is to stay on antibiotics for 6 weeks until our follow up appointment, the usual regime of home physio and oxygen as needed. The sildenafil has been increased but there is still room to increase it again which will most likely happen during our next admission. Overall his oxygen saturations can range from 70-80% when sitting still, 60-70% with a chest infection and when he is active they are too low for the machine to detect. They drop during the everyday activities like dressing and eating. The eating seems to be the big issue. He goes blue and grabs at his chest a fair bit. It can be pretty scarey. Overall his cyanosis is getting worse and comes on quicker. We have a cardiac appointment in a about a month which we will be discussing ways to manage this.
We are all happy to be home except Ethan who has already asked to go back!

Friday, May 30, 2008


After holding off as long as possible and trying everything at home Ethan has landed another admission at MMC. A chest xray revealed changes on both sides, bilateral pneumonia. The plan is for a week of antibiotics and physiotherapy.

He is happy as Larry to be there. As soon as we entered Monash he had more spring in his step. He told Dr David he needed to stay and was happy when he agreed. He loves it that much that when he was being uncooperative the other day Dr David threatened to send him home! He soon changed his tune and was cooperating again.

While we are there the cardiologist is increasing his sildenafil. So far so good. His blood pressure and sats haven't dropped and he isn't complaining about dizziness, headaches etc.

We spend most of the time playing starwars with our balloon light sabres! The staff are droids, Ethan is Obi-wan and I'm Quigon. The staff cop a belting but they don't seem to mind too much! When we are not playing star wars we are helping out the doctors with practice for their exams. Ethan doesn't mind the extra attention!

Tomorrow is Erin's birthday, another family birthday in hospital. Luckily we had her sleep over party last week!

Monday, May 12, 2008

progress report

Sorry to all those regulars waiting patiently for an update...

Ethan commenced the drug sildenafil
on the 2nd April. I had forgotten how scary and nerve wracking new things are. The staff discussed all the side effects and scenarios and went about their business. They started with an early dose so that if something went wrong there was an abundance of staff, luckily for us everything seemed to run smoothly. During the admission Erin was very unwell. We couldn't keep her awake. Ethan also managed to come down with this bug. Very hard to monitor him when you can't wake him! The docs were happy that all limits were fine and that sleeping isn't linked to the drug. It was the subjective things we couldn't monitor like blurred vision, headaches, dizziness, pins and needles. We just had to hope that when he woke he was comfortable. The sildenafil has not made him worse and it hasn't made any difference to his daily life but on average his sats are sitting a little higher which means nothing if he can't walk or do anything anyway. During this admission Adele turned 5. Another family birthday celebrated in hospital..

Ethan has also had a chest CT which shows he does not have bronchiectesis. It was a mixed appointment. I should have been very happy. A good report but we have been treating him with tune ups for years and he is symptomatic of it. I asked if there was a mix up with the results. Dr Armstrong was also suprised and despite the good report Ethan still needs nebulisers and physio sessions twice a day. So does the report mean anything to our management, no.

Ethan has also had a month of cardiac monitoring. A few rhythm changes were detected but not enough to worry about, which indicated his fainting episodes are from the pulmonary hypertension. He hasn't had any more fainting episodes but he doesn't push himself and is not as active as he used to be.

We are currently in the process of applying for funding for a wheelchair. The wheelchair is measured and made specifically for him with oxygen basket and tray etc. We were told originally this could take up to a year but luckily for us there was a cancellation and our report said urgent. We got in within a couple of weeks and the chair has been ordered. The hospital funds a few thousand and we pay the out of pocket expense of about $1500. This will be a great help when it arrives.

We had a paediatrician apointment a few weeks ago. I spoke to them about Ethan's sleeping, well lack of sleeping. I was hoping to drug him at night so that I could get more than 1 hour at a time but this is not an option at the moment and we are trying new things to help him feel more at ease. Hopefully something will work. On a better note he has grown and put on weight.

Ethan is currently unwell and has been for a month. The usual coughing, running nose, perforated ears etc. He is unpredictable. Sometimes he lasts a full day at school and other days I have to pick him up early. It is very hard to plan things. I have had numerous times where I've had to stop and go and other times I don't go out because I think he'll need to be picked up and he's fine. I sent him to school today so that I could attend a school excursion with Erin. I have been chosen to attend her excursions in the past but Eth has always been sick and I've been unable to attend. This isn't fair for Ez who also needs her mum so today I took the gamble, sent Eth to school and went with Ez. The bus had to make a detour on the way home so I could pick him up! He is breathing fast and heart rate is up. Not sure what will happen. I know he is sick enough to be in hospital but after 376 inpatient days you get sick of the place!!! I don't count hospital days for the fun of it, I keep a spreadsheet of admissions and diagnosis so I can give it to new doctors. It saves time and effort. This year we have only had a couple of admissions which is good but home management is getting more demanding and tiring. We are already over the medicare safety net and it is only the beginning of May. Hopefully things will settle down soon.

Eth has oncology, respiratory and cardiac appointments coming up in June/July...

Tuesday, April 01, 2008

Admission #83

Ethan heads back into Monash tomorrow for a scheduled admission which will start him on the sildenafil medication. There are 3 possible scenarios with taking this drug as it is experimental.

1. It could improve his pulmonary blood flow, therefore increasing oxygenation
2. It could do nothing
3. It could make his pulmonary hypertension worse

During his admission, they will monitor his blood pressure and o2 sats for up to 3 days.

This is the last throw of the dice, so we will see how it goes.

In other news, we went camping over Easter on the banks of the Tarwin River. Ethan was excited about going fishing, but due to lack of rainfall, the fish weren't there, either was the water. We explained that when it rains, the river will fill up with water and the fish will come. On the sunday night, Ethan came darting out of the tent when we had a brief rain shower and was signing to go fishing!

The kids had a great time camping and we will make it an annual event.

Easter Bunny also found us there.

Thursday, March 06, 2008

Admission details and plan

Ethan has just spent the last 13days at Monash having IV antibiotics and cardiac investigations. But before I explain these tests I should give some background info.

Over the last 4 months Ethan has struggled on and off with being active. Sometimes he seems fine and at other times he needs to stop as quick as he starts, he turns a purple color and grabs at his chest. It then takes a while to get his color and breathing back to normal. There has been a couple of episodes where he has gone extremely blue/purple and fainted. One of these episodes happened with the girls. Ethan didn't want Erin playing with one of the million Thomas trains, she was only to have the crappy old red one so he snatched Thomas and ran. Erin was in hot pursuit when he collapsed. Erin was screaming "I've killed him", Adele was screaming "he's dead, you killed him". It was hard trying to deal with Ethan while trying to calm the girls, eventually everything calmed down and I made myself a strong coffee! Trying to debrief with the girls afterwards was difficult and has raised many issues on how much do they need to know? It also raised the issue of how much does Ethan need to know?

To add to these episodes Ethan has also been unwell with pneumonia. At our respiratory appointment I explained Ethan's cough patterns which lead to an admission. Ethan cracked it with David (doctor) as there were no beds on the Thursday but he was very excited and happy on Friday when we got the go ahead!

David also wanted the cardiologist to review Ethan to rule out endocarditis. The cardiologist who has known us from day 1 was concerned about the blue episodes being a rhythm problem rather than from the pulmonary hypertension. From there Ethan had an echo, ecg, chest xray, 24hour holter monitor and a stress test on the treadmill. We were told the ECG and echo were normal, I think they meant normal for Ethan as there is no way they can be normal! The holter monitor showed some variations but they were rare. The cardiologist hasn't gone into details about them, but she wants Ethan to have an event monitor for 3 weeks. Ethan coped well with these tests but I knew the big hurdle was his cooperation on the treadmill. How can you get a 6 year old boy who feels like crap on exertion to walk on a treadmill at different intensities while being connected to ECG monitoring, blood pressure and sat machines? His cooperation at 100% was needed if we were to get any results. The answer Bribery! First stop Kmart. Ethan was fascinated by some lego at a friends house and was asking for it for his 7th birthday. So when I appeared that morning with the lego box we were well on the way. "You do the test, you can have the lego". It worked a treat. He got hooked up and away he went with no problems. He managed a massive 3 and half minutes at stage 1 before the cardiologist called it quits. During this time he was extremely blue, sats were 50% and he was complaining of chest pain. It took a couple of minutes for Ethan's heart rate to come down, and sats to go back up. The test showed that Ethan's heart muscle itself isn't getting enough oxygen on exertion. We also need to speak to the cardiologist in more detail about this but it's obvious that it's not the best news going around.

This makes physio harder. Ethan needs to exert himself during physio sessions and the physiotherapists need to encourage him but they can't push him too hard. We are lucky the physios at Monash are good at their job. The cardiologist's orders were that when Ethan says stop it should be respected. She also believes Ethan will stop by himself when he feels symptomatic.

Ethan also had numerous blood tests while we were in. All of which are ok other than his Vitamin D level which is extremely low. We are not too sure why it is so low. It will be monitored and if some more results come back low he will need to start taking supplements.

I've also spoken to occupational therapy about a medical stroller. This will be fitted tomorrow and we can use it for a month. We are unsure about long term use at the moment. The OT at the hospital will speak with the OT at Glenallen and we will go from there.

We are to see our cardiologist at the kids in a couple of weeks. I'm not sure when the event monitor will be organised. I guess we'll find out more on this day about a lot of things. From the respiratory side of things Ethan has to have antibiotics, ventolin, nebulisers and physio sessions twice a day for 2 weeks. He will then have a chest CT and follow up appointment so we can check the progression of the bronchiectesis and plan future tune ups and treatment plans.

Saturday, February 23, 2008

Back in

Ethan's respiratory Doc said to go into hospital for a tune up. A bed was available yesterday (fri) at 3pm, so he will probably be in for about 5 days or so.

Ethan was excited about going back to hospital (seriously)

Monday, February 18, 2008

the long awaited update

so much has happened since the last entry...

We had another two days in Perth. We spent the 22nd sitting at Scarborough beach. It was a beautiful day and nice just to sit and relax. The kids had a ball and Scarborough beach has to be one of the nicest beaches. We spent the morning of the 23rd looking at some shops and getting some souvenirs before flying back to Melbourne. I was worried about the flight as Ethan was not 100% but he handled it fine and my concerns were for nothing. Overall we had a great trip.

We were home just in time for Christmas. I was very excited about Christmas. It was like being a kid all over again. I woke early but the kids slept in!! They were so tired. We did the presents and when it was time to leave for lunch Ethan was most upset. All he wanted was to stay home and rest. Ethan got a PSP from santa which he loves. He also enjoyed opening his remote control monster truck but he was annoyed that both of these needed charging first!! We spent Christmas day and Boxing day catching up with family. Between the 27th and new years we were at home with no outings. The kids finally got to unwind and Ethan finally got to enjoy his presents.

During this time Ethan was up and down still. He was very tired and lethargic one minute and happy playing the next. I spent hours rubbing his legs. He complains about his legs being sore and rubbing them is the only thing that seems to work. I was tossing up about a hospital admission but every time I said I was taking him he improved and had a better day.

On the 16th January Ethan turned 6. I organised a play in the park with his friends. They all had a great day and he got more presents! We gave him a steering wheel for the play station. A huge success. He loves it. He also got a skateboard which he absolutely loves. I can't watch him on it but I can't look away either. It's very nerve racking. He has kissed the pavement a few times but hasn't broken anything yet!

Eth had a paediatrician appointment towards the end of January. He was still up and down and this appointment was good to help gage where he was at. The paediatrician confirmed he had decreased air entry in both right and left lung. He was still having the odd temperatures but nothing consistent. We decided to change his antibiotic and dosage and if he got a temperature or asked to go to hospital I was to take him. We also spoke about his leg pain and the impact it has on his walking. He can walk but chooses to push himself in the wheelchair. The paediatrician had a few theories on this. All of Ethan's illnesses can lead to leg pain, adding all the effects together makes it worse. We are not sure how to treat it as the medicine he would usually prescribe would flare up his asthma and thus he would need more ventolin and steroids, increasing his heart rate and hypertension, decreasing his immune system and increasing his pain!

Eth continued being up and down until school started. I tossed up the idea of a tune up prior to school but he was coping. He wasn't improving but wasn't getting worse, so we decided to wait and see. He has 5 full days with the bus coming at 8 and dropping him back at 4.15. He gets very tired but they allow him to rest in the bean bag and the nurse checks him regularly. Overall he enjoys school and loves the bus trip in on the freeway.

Ethan and Luke were lucky to get tickets to the 20/20 cricket at the MCG. Ethan was asleep when they got home but the next day he couldn't stop talking about it. He loved the excitement of the 20/20, the big hits and music. He also couldn't stop talking about the Rogue traders playing. He loves Natalie! He has a cricket bat which he swings like a dunny door and the bowling action is quite funny but he enjoys it.

Things are still up and down health wise. He has a respiratory appointment this week which will be interesting. I have a lot of questions about antibiotics, oxygen and leg pain, hopefully I can get some answers.

Ethan has also had to deal with loss and grief over the last couple of weeks. Sadly we have had to say goodbye to Poppy John Bell. It has been a very emotional time. It was sudden and extremely hard to explain to the kids. Ethan has a framed photo of Poppy John holding him from Christmas 2004 in his cupboard and sometimes I wake in the night to find Ethan has turned his light on and is holding the photo. He tells me he cries and looks to the sky for Poppy but can't see him, why mum? John has been a huge part of our life and it is very hard to deal with. We all miss him.

On the other hand Aunty Monique is getting married and all of the kids are a part of it. So one minute we are putting death notices in the paper the next we are looking at engagement notices. A major roller coaster of emotions and a reminder that life goes on despite how bad we feel. I'm not sure if Ethan understands what he'll be doing but he said yes. We'll have to wait for the day to see if he gets shy but I know he will look bloody cute in a suit!!!

photos to follow.....