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Showing posts from April, 2013

The official banner raising for schizencephaly awareness

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Yesterday we raised the banner that will in from St Augustine's post to Halifax Canada and them to race in the tall ship challenge.  The banner will also be seen in Washington d c. And new York and ports all across the united states

Dan marino

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Today at our official banner raising in St Augustine Florida Dan Marino got wind of our special little man and stopped to meet him and give him a donation for his wheelchair van. What an amazing man and so sweet to take the time to get to know up and our company

Th pirate adventure

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We had an amazing fundraiser and we are awaiting the pirate ship now so we can hoist the Schiz banner.

Noah Makes the Paper!

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I am so happy with the amount of awareness happening. Noah is my hero


Button surgery

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Heading in

Stress

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It's something most of us parents never address. But it's spoken in personal emails and discussed privately.  Most of us hear a lot that we are blessed and this was a chose path.  I get that but the stress especially as our kids get older takes a toll. On the entire family. Other sibling become adults much faster because they face a reality others their age could never imagine.
My son river is 15, he should be getting ready for games and playing with his friends. I did. I had a childhood. But it's not the same for him. He spends his days helping me. He is in charge of responsibilities that I could have never handled in my selfish teen age years. For that I feel both grateful and sad for what he is missing.
  He has mentioned many times he will never leave home. That makes me sad. He has already planned to go to college close by to be available to help. That is a wise and compassionate decision for someone his age. But still more and more parents going through stress right…

The not so perfect day

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The challenges of a mother

Over the last few years and fighting head on with Dr's complaining about Noah's scoliosis I had to wait until he got to 51% before they would do a corrective brace for him. That was six months ago and since that day things have been moving way faster than I expected.
 First last month his left collarbone became dislocated due to the brace moving him so quickly. Today we found he is having major pain in the hip area. 
 Xray confirms that his hip is up and out for socket. Noah has severe scoliosis and as a result surgery is too hard on his lungs. The last surgery for a G-tube nearly killed him when his lungs collapsed and a three day stay ended up being In CCU for three weeks. So surgery is just not an option at this point.
 Dr and family decided on a frog like cast with a metal bar to separate the legs as that seems to pop the hip back into place. hoping that eliminates surgery down the road. 
 I won't lie. I feel let down by the medical world. I feel …

Noah has learned to say yes

After weeks of work Noah is now using his left  hand to say Yes ! He is also shaking his head for No and is doing it all on prompt now. I am so very  proud of him

Our video

I am so proud of noah

Awards of excellence

Yesterday noahscart was presented with an award of excellence from a local neurology team for efforts in raising awareness and support for schizencephaly through our non profit. I am so extremely proud of our team!!