What a week....!

It's been a tricky week this week!  My depressed mood of a few weeks ago has certainly lifted, as I knew it would, although it felt an impossibility at the time. 
This week I have had no time to myself. I haven't had space in my head to reflect on anything lately, and dont we all need (and deserve) a bit of space. 


It all began with Miranda throwing up at 5 am on Monday and continuing for 12 hours.


Then the dog ate my shoe! I was so angry (mostly at myself) but oooohhhh, my favourite pair of winter ankle boots, RUINED! 


With Miranda vomiting and gassy, I had to cancel appointments  at  Westmead  for Charlie who was to have his new afo (ankle foot orthoses) and kfo (knee foot orthoses) fitted and an appointment with his physio. 


On Tuesday, Ben caught the wretched virus and stayed home. I rang the hospital to see if our orthotist, Tom, had a free appointment. He did, so up the highway I dashed with Charlie!

Waiting to be fitted with his new walking equipment, Charlie became so upset he needed a dummy!

I thought that our visit to the Orthotics Dept was going to take 20-30 minutes maximum. It took nearly 2 hours! It was very frustrating as Tom hadn't finished the orthotics as he had a fair bit of modifying to do on both of them, not to mention that he had put the straps on the wrong way. 


You would think that there is not much to traumatise children in a simple, little room, but Charlie cried for most of the 2 hour visit. (We sang twinkle twinkle and Old MacDonald a lot!) I think he has such bad associations with small white rooms in that hospital, where he has had needles or cannulas inserted, he was expecting another bad experience.

GET ME OUT OF HERE!!

Eventually, we did get out of there.


These pictures are really for the grandparents and anyone interested in the kfo. Charlie only has to wear the kfo on his left leg as his knee turns inward as he walks. The kfo will force the knee to face forward as he walks.

We put it over some tights so it wont rub. He is not happy having it put on.

But as usual, Charlie is taking it all in 'his stride'. As much as he hates the fuss of having the kfo fitted and put on in the morning, it is not holding him back.

this is just cute!

By today, Thursday, Ben had almost lost his voice and the doctor gave him 2 days off work. So he is catching up on his report writing - only 120 or so to go.

working away - 'Jane' is doing well, she's top of the class!

So for next week I am praying that everyone recovers from the nasty virus, and that Ned and I dont come down with it. I need everyone to go back to school and work so that I can have some time in my own head. To allow me to stop and get my feet back on the ground with the help of a large cappuccino and a date scone.


I'll be needing therapy to get over the dog (I cant even say her name) eating my favourite boots. And I mean she completely wrecked one, never to be worn again......


Favourites this week:


TV: 'Offspring', Channel 10, - so sad with Rocket dying but loving Gary Macdonald
'Silk', ABC1,- wouldn't we all love to be that brilliant and to be pregnant with Rupert Penry-Jones' baby!
 also watched 'Tricky Business' on WIN because it's filmed in Wollongong. The clever camera angles make Crown St Mall look almost glamorous.


Dud of the week: Ben insisting on watching the 2011 Royal Variety Concert (my idea of dire!!!) 




Warmly,
Kate

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