Feeling Thankful.
It’s been a big day for us in Sydney. This morning we had Levi’s appointment with the neurology movement disorders and Neurogenetics team that have been consulting on Levi’s case since last August. To say that we felt heard, understood and acknowledged would be an understatement. They were so willing to listen & hear what has been going on for Levi. .
This morning Levi received a diagnosis of Dyskenetic/Dystonic Cerebral Palsy. This is not a diagnosis that has come quickly, it is something that both we and his team have taken time (over 6 months) to consider carefully. I in particular have wrestled with this a lot, because of what this means for his future and the misconceptions about CP and that people wouldn’t understand.
Today his team in Sydney explained that Levi’s CP likely has both a genetic cause but also can be linked back to when he suffered from Parechovirus. .
Whilst we left Levi’s appointment with a few things still up in the air, we agreed that it would be better to do the MRI back in Brisbane because Levi’s lung function isn’t where we need it to be for a general anaesthetic at present. .
We will be moved under a new neuro specialist in Brisbane who can communicate more clearly with the team in Sydney. We will likely see them again, but have agreed that we need someone on the ground back home for when things get sketchy & complex, as they do with this beautiful boy of ours.
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If you’re reading this & finding it a little confusing since Levi doesn’t “look” like a typical child with what people know to be CP, that’s because there is a spectrum of the illness & Levi’s movement disorder sits on a milder scale than some children & adults in the community.
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Professor dale said today that it is important that everyone involved in Levi’s care are speaking the same language, and currently that hasn’t been happening. This diagnosis will allow for this, so we will be returning home tomorrow and linking back in with everyone there to ensure we are all speaking the same language in regards to Levi’s care and therapy.
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He is still our little rockstar and we still believe that he can and will do great things.
We have been learning all about money in Tranterland over the last few weeks. Sophie & Lily both have age appropriate chores which we help them to complete each week; and because we can’t get enough of the Barefoot life, we are employing a simplified version of Spend, Save, Give.
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Sophie was very excited to spend her $2 yesterday. I had a little mama teary moment while she reached her little hand up to pass her money to the cashier at Kmart. They grow up too fast!!
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One of the most important lessons my mother taught me, was about money. Being a bank manager, it was a part of our life that she spoke to us about money very openly at home. I’m loving the opportunity to pass on some of those lessons to my kids too.
