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Wednesday, 25 April 2012

Charlie's choice Part 2

Thanks for coming back to follow the story of Charlie.

Just before his 3rd birthday in March, Charlie was so confident with his Kaye walker that he could pick it up and take a step.  We all looked on and wondered what was going to happen next?

He had to see his physiotherapist, Suzie at the Children's Hospital at Westmead (CHW). She admired how he was going and said to me that she thought that he had the potential to 'walk off' his walker... one day... maybe when he was 8....but dont hold her to it.... he might not too.

At the time I gushed and hugged her - wow we hadn't even thought that would be a possibility.

We were happy with whatever Charlie achieved and at his own pace (so to speak).

And then, in his own time, Charlie chose what he wanted to do...

take a look

Anything is possible, you see!!

And if there is anything that you thought you couldn't do,
 or it was too hard to try,
think again, choose again, you just never know...

Kate x

Charlie's choice

Our little lad, Charlie was born with Spina Bifida and hydrocephalus.  However, this medical fact is yet to dawn on our 3 year-old.  The condition was diagnosed in utero at the 19 week ultasound and left his Dad and I shattered.  At that time we spent a week getting advice from experts as to what Charlie could expect in his life- the anticipated disability and any complications.  We were told to expect that he would probably have the ability to walk with support, such as a walking frame with the need for a wheelchair for longer distances. He would also have significant balancing difficulties because of the incapacity of his brain to deal with all the fluid passing through it, known as  hydrocephalus . (This condition used to be known as water on the brain)

Charlie's 3D ultrasound at 27 weeks. I had ultrasounds every 2 weeks to monitor his growth.

Charlie's birth was early, not quite 36 weeks, but successful.  He had surgery at 24 hours old to close the lesion on his back where his spine had stopped growing and was protruding.

                                      a few hours old, a rare moment without all the tubes in

                          a rear view with the plastic wrap covering his S1 lesion prior to surgery

The initial surgery to close up Charlie's back was a great success, until once we were home and he started to go down hill.  A local pediatrician found an infection in the scar on his back and so we went back to the Children's Hospital at Westmead (CHW )for a week with IV antibiotics.  Then as time went by other things cropped up such as pyloric stenosis requiring surgery at 11 weeks.  At around 10 months he had a VP shunt inserted into his brain to take the extra fluid in his brain from the ventricle to a space next to his stomach. This became blocked not long after and required replacing.  Then we had a time when things went smoothly and hospital seemed a distant memory.

Until.. New Years Day 2011.
 Charlie had another blockage and needed a new shunt inserted.  This went well except that the wound over the shunt never seemed to heal properly.  The scab came off to reveal the shunt workings in February, and then again in March.  Charlie was not himself and finally on ANZAC Day last year a doctor who had never seen him before ordered a stomach ultrasound and found a pool of fluid sitting at the bottom of his shunting tube.  Another Ambulance trip to CHW revealed that the fluid was infected with a kind of staph and the infectious diseases department set to work to try to kill it.  Before it could be killed the infection baffled doctors by somehow climbing into Charlie's brain. It was a very scary time and the hospital staff worked overtime to cure our little boy.  We did a lot of praying, and tried our best to remain positive.  And we really did have faith that it would be alright. And Charlie helped.  The medical staff often commented that if they hadn't known the facts and tests results they would not have believed  just looking at him that he was so close to death.

          still finding energy to play even with tubes from his badly infected tummy and his brain

On June 2, exactly 6 months since our first admittance, Charlie was discharged with a clean bill of health.  He had 11 weeks in hospital and 8 surgeries over 6 months and finally he was ready to come home.  As you can imagine this experience had a huge effect on us all, our older children especially. We were all exhausted but extremely relieved Charlie had pulled through.

And now on with life...
We had been home for a few weeks when our local early intervention physiotherapist came for a home-visit.  We sat and discussed Charlie's future and Lindy was saying how she predicted Charlie wouldn't be up to doing anything new or challenging until at least December. I nodded my head and thought I should put away the walking frame we had on loan from the hospital.  But at the moment Charlie had crawled away from us and the next moment he was walking on his knees pushing the walker in front of him.  Lindy and I sat there agog.  Charlie!!

and that is when Charlie showed us to never underestimate him,
 his desires or
incredible spirit

by the end of July Charlie was walking in his frame although he never really liked the frame

In December, Lindy the physio and I were once again wondering what Charlie would aim to achieve in 2012. She had a Kaye walker that she thought he might eventually be able to use. And then, as he had done before, Charlie crawled to the walker, got onto his feet and took off...

                                           on a Saturday afternoon family walk to the park

..stay tuned for our very exciting news and tomorrow I will reveal the latest talents of our little lad, hopefully including some video (if I can figure out how to upload it). It's nothing short of a miracle.

Monday, 23 April 2012

A fond farewell

My grandmother died on Easter Saturday and I took my eldest two children (aged 8 and 6) back home to Tasmania to say goodbye.  I am the eldest grandchild in the family and I was also the closest to Nan.  We had had an opportunity to become friends in the years following my grandfather's death when I was at home with small children. I would slip in to see her when I could and we would enjoy a chat and I would listen to stories and copy down recipies. It was a precious time I now cherish. 

I was extremely grateful to my aunt and my Dad who allowed me to be a part of organising the funeral, it allowed me to feel a part of the farewelling process. It was a privilege to choose the colours for the roses and the style of floral arrangement for the top of the coffin. We selected gold and apricot colours reminiscent of the roses she had grown in her own garden many years ago. 

                                                   Nan with me and the children in January

Nan was 93 so the funeral was not a desperately sad occassion. She had been suffering in the last few weeks of her life and she had expressed her wish to move on out of this world. Ben and I thought it was important for our older children to go to the funeral. They knew Nan, and the photo above was taken when we last saw her in January. Some people were a little alarmed that I was taking the children with me, but I wanted them to see that death is a natural part of life, especially when you are 93 years old. My maternal grandfather died when I was about 11 and my brother and cousins and I were not allowed to go to the funeral. Children didn't go to funerals then. We hung around in the garden while all the adults went to say goodbye and we felt empty and left behind. I didn't want that to be the experience for my kids. I also wanted to remove some of the mystery surrounding death and funerals for them, especially as this funeral was so much about celebrating the long life of a lovely lady.

The funeral itself was truly a family affair. My father, a minister with the Uniting Church, took the service and my sister-in-law, Cheralynne played the piano for the stirring music and hymn selection. My brother and cousin read from the bible. My aunt, Nan's eldest daughter gave a eulogy and I gave a eulogy representing the grandchildren and great grandchildren.  It was a very moving service made more so when 5 of the 8 great grandchildren sang 'Amazing Grace'.  My brother's 3 children and my older 2 barely had 20 minutes practice the night before, but sang so beautifully and true.  Nan would have been so touched.

Nan's funeral was followed by a great 'wake' with lots of family, many cousins, aunts and uncles etc., eating pizza with wine and fizzy cordial at my aunt's place.  The kid's were happy on the Playstation, while the rest of us shared memories interspersed with much laughter.  Nan would loved it!  

I just want to thank my Auntie Gail and Dad for making sure the funeral was held when it was so that the children and I could be there.  I will always be grateful to have shared such a special time with you and all the family, and for the opportunity to participate in farewelling our Nan.
Kate xx
4 grandchildren at the 'wake'. I'm the rose amongst the thorns!!

Friday, 20 April 2012

New Beginnings

We're back!! It has been a long break but I am back here on my blog, and I may even venture back to Facebook!

Since I've been away I have been working hard on finishing my course to become a post natal doula. In October/November I had the pleasure and privilege of working with my first family. It was a great joy and they are doing really well. I was ready to change nappies, burp, cuddle and bathe little Lachie, as well as make lots of cups of tea for Mum and Dad. But I actually spent most of my time watching the new parents kiss and cuddle their new little one and and wonder at his creation. Mum did lots of talking as well, doing what all of us new Mums need to just after birth, go over and over again all the details of the pregnancy, labour and birth.

I've also been working on my 4000 word communication assignment which is a reflection on one of my birth experiences. It has been so painful to write at times it's been like giving birth all over again!

We are happy in our house to be enjoying a baby again. Her name is Annie (Annabel when spoken to sternly) and she is a 17 week-old orange-roan cocker spaniel. She is gorgeous, except when she chews the legs of the dining table!

Here are my two babies after a hard working day.