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Natalia Frost
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36 followers
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The epilepsy monster
I try to keep this blog as positive as possible but truth is not everything is rainbows and butterflies.  I try to live day by day because experience has taught me you never know how long situations are going to last. If you follow our story you know Sophia...
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The need to fit in.
Why do we seek to fit in somewhere, anywhere? Maybe it's human nature to want to identify ourselves with someone, share the same interests and even the same struggles with a group of people so we don't feel so alone. This is especially true when you have a ...
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Keep calm and model on
It has been a little over 4 weeks since I decided to really immerse into the PODD and show Sophia what could be her voice. It's amazing to realize the amount of beautiful moments of communication that have been missed between me and my daughter and so many ...
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Communication is power!
We got Sophia's PODD (you can read all about it  here ) two years ago when her wonderful former teacher introduced us to this amazing communication system. It was all new to us and I have to admit I didn't use it as much as I should have, I got stuck saying...
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Who is Sophia?
Sophia is special. Sophia is not a diagnosis and she is not a statistic. Sophia is special, and I don't mean special needs special but special. She is unique and not because there is no one else with the same exact chromosomal arrangement (read here ) but b...
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I am only human.
Last year was tough! It was hard for Sophia who had to suffer through not only the seizures but also side effects for the many different medications we tried, it was hard for us to see our little girl's beautiful personality fading away.  The last few month...
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Lots of things have happened
Lots of things have happened since my last post way back in May. At that time Sophia's seizures were really bad and we were running out of medicines to try. We decided to go ahead and get the VNS implant in hopes that it will control the seizures and hopefu...
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Finding peace in a world of "what ifs"
Lots of things have happened since my last post way back in May. At that time Sophia's seizures were really bad and we were running out of medicines to try. We decided to go ahead and get the VNS implant in hopes that it will control the seizures and hopefu...
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The amazing Sophia.
"A sneak peek into the unique world of the girl that amazes me every day", that's the description of this blog and Sophia proved that statement once more today. It has been a really rough few months for her dealing with lots of seizures and side effects fro...
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Side effects.
Epilepsy sucks! It really does. It's stubborn and it's tricky, when you think it's under control and you start to relax, the seizures start again. Sophia was diagnosed with epilepsy about 5 years ago and it was pretty manageable for 4 of them. She was on on...
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