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.....

1 comment:

Anonymous said...

Wow! Lots of good reports and exciting happenings. Enjoy all the good times without guilt. You all deserve lots of happiness and relaxation time. Hope the good times continue and Ethan's only disappointment is not staying in hospital.
Cheers, Judi & Rob