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.....

Jo