Some days make a difference

By the way, there is a video at the end of the blog worth seeing....


I was working on a blog about motherlove and bonding but then yesterday happened and was a real distraction.


Charlie has been well and truly under-the-weather for about a week.  So much so that we couldn't go to an exciting park date with his friends at a local park last Saturday.  He was holding his head, he had been crying for seemingly no reason and lying down to play with his cars. In the past these activities have been indicators that the shunt in his brain was either blocked or faulty.  Then, yesterday Charlie was looking miserable and wouldn't even eat his breakfast and Ben and I decided we needed to do something. We bundled Ned and Minnie off to school, and left Annie with her friend Sherlock, and drove up to the Children's Hospital at Westmead.

Our Emergency wait.  (Ben left his real glasses in the car! He kept saying he was 'light sensitive'.)

It was a long day in Emergency.  We waited more that an hour and a half for our initial conversation with a doctor.  Then more time went by and finally Charlie had an xray series and then a CT scan.  The last time Charlie had a CT scan he didn't require sedation (we used music), so the staff attempted to do it with him wide awake, at first.  He wasn't having it though. We put Monkey through the machine and everything but he refused to lie down with a lot of noisy protest.  So back to Emergency for that ghastly-tasting sedative Ben expertly squirted down his throat.  He has been known to have the sedative and remain wide-awake. I found myself praying that he would conk out because we really needed this picture of his brain!  And then he fell asleep and very deeply too.  So we raced back round to get that vital picture and then waited for the results....

                                                          All tests completed. Thank goodness.

The Neuro fellow appeared and announced that everything looked fine. YAY!! He  acknowledged why we had brought Charlie to the hospital but at this stage the ventricle was not noticeably changed from his last scan. Ben and I were relieved, whilst Charlie just kept on sleeping!


So it was time to go home and see our local paediatrician.


We finally got on the road about 6.30pm and headed down the M4 and then turned on to the M7.  Ben and I were chatting away, discussing how many children had come into Emergency whilst we had been there.  There were beds in the halls and then we heard they had even run out of beds as were leaving - just on a Tuesday afternoon.  


Then a semi-trailer entered the M7 and drove up very close behind us.  We were driving in Ben's little Nissan Micra so it was a little intimidating.  Ben drives up and down the Hume Highway everyday for work so he is used to trucks, but then this truck pulled out into the right hand lane and sped up to go bonnet to bonnet.  Ben couldn't get away from the truck and then I noticed that the truck wheel was getting closer to Bens door. I screamed as the semitrailer moved over into our left hand lane and pushed us off on to the thin shoulder!!!


Thank God for Ben's driving skills and his calm nature, and having a little car that could squeeze down the shoulder next to a thick cement wall one side and a menacing semi trailer on the other.
I think we both stopped breathing then.  As it dawned on us what had just happened and that we were alive and the car didn't even have a scratch.

Ben thanked the angels that were certainly there with us.




So a terrifying end to a Big Day.  It did make us so grateful to get home and hug Minnie and Ned, to tuck all of them safely into bed and to hold each other for a while.

                                      Annie and Charlie curled up together and crashed after a big day.

And here is a special P.S.
Although Charlie is still not 100% he wowed me again today.  Ben couldn't believe it, neither will the experts until they see it for themselves ....

-Go Charlie-

Autumn Days

We had a wet and miserable Summer here in NSW.  The only bit of summer weather we had was in Tasmania during our family holiday there in January.
But late Autumn has been lovely in the Southern Highlands. We have had bright, clear blue skies which has meant good weather for going outside. 

Charlie, Annie and I have been doing a daily walk around our local lake in an effort to wear out my child and very enthusiastic puppy. Lake Alexandra is very pretty and the sight of the autumn colours has a great soothing effect on my soul.

We'll make the most of these days as Winter will descend in a few weeks and the sun may seem a distant memory.

Charlie on his heavy-duty trike. Please excuse the dummy, we are working on it's disappearance!

I hope you are enjoying clear,sunny and inspiring days this Autumn.
Kx

Asperger's meets soccer

I just want to say how touched Ben and I were by the amazing display of excitement over Charlie's latest achievement.  Thanks so much for all the emails, texts and FB messages full of encouragement and cheers for our little lad.  


It has been really hard writing another blog to follow the last one. 


But we did have another achievement to celebrate on Saturday.  Our eldest son, Ned, had his first game of soccer.  Like many 8 year-olds every Saturday morning this winter he will be running around a muddy football pitch chasing a ball in a pack of children trying to kick a goal.  And we will be on the sidelines appropriately rugged up and in fine voice cheering him on.

My firstborn  is a very typical 8 year old.  He loves his Wii, his computer (Minecraft) and playing backyard cricket. He also loves the engineering program 'Big, Bigger, Biggest', designing buildings (his own version of the Burj Khalifa in Dubai only taller), trains and Google maps. He has some funny little habits and ways.  He's a really nice kid but had trouble socialising with other kids his age because he could be terribly intense.  When he was younger he would design complex systems with his plastic Thomas the Tank engine train tracks.

          Ned at 4 years old. Track building became a daily occupation. This is one of the more simple designs.


One day Ned's preschool teachers took me aside to tell me of some things they had noticed about him. He was walking on his tip-toes.  He found it difficult to cope in the class without clear directions and structure. He was having trouble with his speech. We had moved just a few months prior and we had a caught an airplane to our new home. Ned was drawing the airport from our original home over and over again and the teachers were concerned.  What could it all mean?


Then someone brave said "Could he be somewhere on the 'Autism Spectrum'?


Ben and looked at each other and didn't know what to think.  I knew a bit about Autism as I had a first cousin who was truly autistic in it's most limiting  and crippling form.  He had attended a special school and could barely speak and I knew none of that fitted our Neddy.  


What we didn't know was that the Autism Spectrum is so wide that most people fit on it somewhere.


So we went visiting a few experts, a child psychologist, an OT, a speech pathologist, a paediatrician or 2. For a while we couldn't get the experts to agree.  Ned looked people in the eye and conversed with them in quite a friendly manner. He seemed to have an empathy for those around him, although he could also be very rough and had no idea of his own strength or spatial awareness.  He would have meltdowns and didn't cope with change or anything unexpected. And he was moody - going from the peaks of the most exciting highs, to the troughs of absolute despair.  All this and he was just 5 years old.

Time went on though and we didn't look for a 'label' for him.  He started Big School and we waited to see how he would go.  Finally, last year, Ned was diagnosed as having High Functioning Asperger's Syndrome.   Ned has never asked why he was seeing doctors and specialists.  We have been ready to discuss everything with him, but we're being guided by him and his own internal process.


Up until now Ned has found being in teams at school difficult and didn't really 'get' the dynamics of team sport.  He has always been challenged with his physical coordination and was a low-tone baby.  This made games hard and running and various sports did not come naturally for Ned.


Then he started hanging around with a nice group of boys at school and at lunchtime they would kick a soccer ball around.  Soon they all really got to like it and Ned started to understand how to play alongside and with others. And, now for the first time, Ned was ready to play a team sport.  

Last Saturday was the first game for the season, and the first game for the team.  We all braved the 3 degrees to watch the Under 8's game at Moss Vale.  And as my daughter says, it was spectacular!!  Ned kicked the ball, took his turn throwing it in after the ball had gone out, had time on the bench and had a seriously GREAT time!!    


So every Saturday morning for the next 3 months, come rain, shine or frost we will be found on the sidelines of football pitches around the Highlands screaming 'Go Mighty Mittagong!!!' 


....and loving it. 

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...

warmly,

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.
Kate

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!!

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.
Cheers,
Katexx