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


Anonymous said...

Your lives are lived on a see-saw aren't they - good news then not so good then good again. Hope that with the festive season behind you Ethan might get a chance to develop a decent sleep pattern. Good luck! Hope the new year brings a solution for Ethan's vagueness. All the very best, Joan and Andy H

Anonymous said...

Merry Christmas and may 2009 be good to you all. Thought the family looked pretty good decked out for Monique's wedding. Hope the good news continues and the not so good disappears.
Judi & Rob