Wednesday, November 16, 2011

Hills and Valleys

So much happening these days, they all seem to disappear. So much to confront and overcome and learn. Somethings are amazing and inspiring and make me cry with tears of joy and thankfulness and other things are just not fair and heart wrenching and I am overcome with sadness. One of my fellow HIE Mammas has described this as Hills and Valleys. Some Highs some Lows. I thought I would share some of the Ups and Downs of the last few months...

The biggest and best high would be that Narelle, Trav and Carlee Climbed Mt Kinabalu for Noah on July 11th. They fundraised a huge amount for Noah and because of them and the support they received, life will be a bit easier for us and we will be able to pursue some new therapies and equipment  in the near future. You guys are truly legendary! Thank you so much to everyone who donated and showed their support and compassion for Noah.

Following on from that I entered a competition through Red Balloon where you had to tell your Story of Thanks. I entered in how Narelle, Trav and Carlee climbed Mt Kinabalu and fundraised for Noah and how I could never put into words how much it means to us. We ended up with top votes and were chosen as the winners of the competition. We won a $500.00 Red Balloon gift voucher for our awesome climbers. Whilst in Melbourne we used this towards a special Limo Wine Tour of Gippsland. We had such a lovely day. It was nice to get out and spend some time with the people we love.

I am yet to reconcile whether Noah being accepted into The Centre for Cerebral Palsy is a high or a low, if that makes any sense. What I mean exactly is that I am glad because it means better therapy and support and access to things that will help us and Noah. But it is also just about the most terrifying thing at the same time. Its scary and unknown. Noah has been diagnosed with Spastic Quadriplegic Cerebral Palsy, as a result of his HIE. There are different severity's and Noah's is in the highest severity level (V). As he is still young this may change somewhat. There is thus far no cure for CP, although there are quite a few different therapies/treatments which can be very helpful. We are currently researching and finding out what will best suit Noah. We have a team of therapist at TCCP. But our overall coordinator who is our Occupational Therapist is our favourite :) She is lovely and so on the-ball with things. We have been trying out some different equipment to aid Noah in different positions as he can't support himself very well. The one on the right is called a "Wingbo". It's a type of tummy time swing. It puts Noah in a great position to push off his arms and get his head up. This was the first time Noah was able to lift his head up in a tummy position. This may seem like such a small milestone and not a huge deal but it was such a strain for him and a huge, massive achievement and we are so very proud of him.

Another awesome thing that happened recently was that Miranda Kerr and the Kora Organics Team posted our story on their Blog. Miranda is quite the advocate for CP and such an inspirational person. She has actually written a lovely book called  "Treasure Yourself ". She says about it, "I wish to share my inspiration with you, so that you will treasure and believe in yourself, have faith in your abilities, accept who you are and uncover your own unique gifts. We all have wings, but it is up to each one of us to have the courage to fly. My hope is that these words and the affirmations included will help empower you to reach for your dreams even in difficult times. With action, anything in life is possible". - Miranda Kerr xxx She seems like such a lovely, down to earth, natural type of person. We were really touched by the addition of our story to her blog.

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