For those of you that haven’t yet received our Christmas card in the post please accept this as our offering, for those that have……well to be honest I haven’t got around to sending them yet so this could well be it.
Despite our month being bookended by stays in Club WestMed it certainly has been a very big and positive turning point in our journey. It may almost be safe to say that we are probably in the best place we have been since his ALL diagnosis.
This is a vast improvement since my last post when I found the going tough and to be very honest wasn’t sure if our little guy would be here at Christmas. It’s amazing how much can change in 4 weeks.
As you know the little guy had his line removed in the middle of November. During this stay, Radio 2UE held their annual radio telethon which was a great reminder of just how far our friend has travelled over the past 18 months. I’m not sure I’ve shared this pic of him before, but the Fundraising Department at the hospital have been using his beautiful bald head and baby face on some of their collateral including some rather large pull up banners which have been doing the rounds at their fundraising events. A number of Doctors and staff have commented on the banner and when it’s not on the road it sits pride of place in the entry to the Fundraising Department. You can only imagine the reaction from some of the radio presenters faces when they saw just how far he had come, bringing the odd tear to some. The banner itself is certainly larger than life
In my last post I made tongue in cheek jests about swimming and surfing lessons and let me tell you, I wasn’t very far off the mark. Within 24 hours of being discharged from hospital he found himself floating down at Little Manly and absolutely loving the water and freedom it’s gives his legs.
And it’s not only the sea but the baby pool which was way too cold for his brother and sister
Loving it so much he insisted on having his feed in there
After 2 hours in his baby pool he asked me to “fix it up” pointing to the pruny, wrinkling skin on his hands and feet.
We’ve had numerous visits to the beach and local pool and I’m now working on Pete to have our own pool put in at home, after all Ed’s been through it’s the least Pete could agree to (just joking.
More on the school in a bit but whilst on the swimming front it’s worth mentioning that his end of school picnic was down at Collaroy Beach this cool and windy Wednesday just past. The beach and park is well equipped for kids with special needs and the surf club has large water wheel chairs that sit on top of the water in the sea pool. His beautiful teacher took him on the water chair as they’re quite big and difficult for him to sit up but this was definitely not enough wet and water so she jumped in him with him and had a proper swim despite the cold temperatures- for her, not him of course.
As a result of his enthusiasm of the water the up shot of this is that Collaroy Beach Surf club is about to start a summer swim program called Sea Turtles which is a nippers based program for kids with special needs and I was asked if I would like him to participate. Who would ever have thought our little guy selected to start 2015 with a Nippers program? Always full of surprises.
Perhaps the biggest and most exciting news though is that Edward has started at Arranounbai School which is a K-12, NSW Government funded school for kids with special needs and located just up the road from us at Allambie Heights. Since I was so concerned about his cognition and development, the school Principal and staff were absolutely amazing in fast tracking his enrolment process and arranging school transport for him in an unbelievable amount of short time.
Prior to his official enrolment he had been spending short periods up there, initially for art class and then as more teachers met him he was invited to participate in more and more classes, winning many friends along the way. His official enrolment came through whilst he was having his central line out so in a matter of 3 days it was hospital, beach, and school on the school bus.
For the passed month he’s been going 3 days a week, the same 3 as Tom is at Ampo’s Family Day Care and I think I’m going to keep it like that next year.
The pictures speak for themselves but it has been a massive turn around for the best on so many levels. He has a wonderful teacher and support teacher who have worked really hard to ensure a smooth transition and been so kind and caring to our little guy.
He absolutely loves it, to the point that he cried on his first day off school after 3 days at school and kept asking me all morning when he was going back.
It’s been great to have some time to myself catching up on 2 years of Dental appointments, Health check ups, tax, filing, sorting cupboards in addition to managing and navigating my way through the system of living in the community with a child with special needs. As you all know we have been well supported and connected to program’s through the hospital but as we spend more time at home and less time at this hospital I’m learning there’s a whole other world out there of support program’s, respite services and Government funded initiatives all of which take sometime to wade through the maze. As a pushy, articulate and educated person I’m finding it challenging at times to muddle my way through the process so I’m sure there are others who may find this more difficult than I. There’s a business in that somewhere but I’ll leave that alone for now.
His new wheelchair alone has involved large volumes of paperwork, several appointments and a 6 month wait.
I’m really looking forward to getting more involved with the staff, parent and students up at Ed’s school and I’m so pleased that we’ve found such a happy place for him. It’s also been a positive step for me in opening up so many more opportunities in the community.
And so in true Eddie form he ended his school year with a bang. On Wednesday ( as you know) he spent the day at Collaroy Beach for his school picnic, swam with the teacher and convinced the lifeguard he was the perfect candidate for their Sea Turtle swim program. The minute he got in the car to collect Issy from her last day of school he became tired, lethargic and the temperature was up- all of which was enough to land him into the Emergency Department at Club WestMed on Wednesday evening.
The source of these symptoms unknown and more than likely viral or just exhaustion from such a great month at school. At this stage it’s hoped we’ll be home today, Saturday. Here’s hoping because we have Christmas to celebrate with family and beach holidays at Crescent Head, Shoal Bay and Palm Beach planned throughout the month of January.
With the 3 kids in school or day care we’ve had a plethora of Christmas activity all of which helping to enjoy and get into the Christmas spirit. We’ve managed our annual to Christmas trip to the city and Opera House Baby Proms
And enjoyed a special day at The Bear Cottage Christmas Party