Saturday, March 16, 2013
Well I haven't written in a while - so much to do, so little time (isn't that what they say?).
Alice is now 7 years old and it's time I updated some photos and reviewed her progress.
Alice is in grade 1 at main stream school - She LOVES school and has lots of friends ... Alice is so bubbly and happy, maybe a little too loud at times ... but to see her walk up to her friends for a cuddle when she arrives in the morning brings tears to my eyes! YES ALICE IS WALKING!!!
Alice hadn't had any seizures since October 2012, but after a bad week in January 2013, she is now having 2-3 seizures a night. We are now using a medication called Zonegran (Zonisamide) which appears to decrease the intensity and length of the seizures .... but she still stops breathing, and my heart stops for a second every time I hear a seizure start. BUT Alice is truly amazing, she has a seizure then sits up for a hug, and smiles at me ... what spirit and character she has - I am so proud of my girl (but you already know that don't you!!!!)
Alice's diet is still a huge part of my everyday ... everything is carefully cooked, with a balance of fruits, vegetables, meats and carbs ... the wrong balance can cause disaster with her vomiting and in awful pain and of course her seizures get worse. Giving her the wrong food is even worse, and as her
Paediatrician says, is life threatening - so strict supervision is required - now that Alice is walking, and VERY independent, she has to be watched even more carefully than ever.
Alice was walking fairly well, then regressed for a while in January, I think she probably fell and got scared? SO we have worked really hard on getting her back on her feet AND she pushes our hands away and takes off to wherever she wants ... usually off to see her brother or her friends.
Some photos ... See how beautiful she is.... mmmm I put about 15 photos on this blog BUT they all disappeared when I posted it - So I will post more
another day ... Have a look at Joshua's photos via You Tube!!!
I have also included (Via You Tube):
- A video of Alice walking with her brother (of course)
- A preview of a special movie Alice's brother, Josh, made about her progress ... this is truly inspirational
and will bring tears to your eyes ... I am so proud of my clever boy
- An interview Alice, Josh and I did for a Disability Awareness Day
- And a slide show of great photos that Josh made up
My quote for today:
"Our lives begin to end the day we become silent about things that matter."
Martin Luther King, Jr.
... Enjoy ... share with friends ... and I hope to write again soon. X Nicole
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