Wednesday, October 31, 2012

Halloween Costume Pic Coming Later Today

I'll post Dear Son's Halloween pic later today.  He's been doing well however he is having a lot more seizures now and had an emergency at school yesterday so I am a little behind. I am taking him to the doctor on Friday to check his implanted device. He has a device implanted to help with seizures and I am guessing the battery may be getting low, hence the increased seizures.

I finished the costume late yesterday and it's awesome! Probably one of my best ever.  Sometime this morning, a friend of mine will be coming over to help me take Dear Son over to our clubhouse so I can get some pics of his costume.   I'll share it with you once I get a chance to get them downloaded. Thanks!

Friday, October 05, 2012

New You Tube Video of Dear Son

I've been telling you for months what a difference Dear Son's new blenderized diet has made for him and now I am excited to show you a new You Tube video they took at school.  You may remember back in 2009, Dear Son has the H1N1, was on a ventilator and nearly died. He contracted the H1N1 the night before he was going to leave on his Make a Wish Trip.  Dear Son also has a progressive neurological disease and wasn't able to move his leg, feet or even toes for quite some time after that. In October of 2010, I started him on Now Foods Coconut Oil and he was able to move his feet a bit, enough to turn his Lazy Boy chair (it's the only chair he can sit up in). Now, after 10 months on his new blenderized diet, he is much improved. He can now kick a ball, sit in his wheelchair without a bunch of props and is happy to kick the ball. I love the smile on his face after he kicks the ball!

Dear Son still has difficulty moving. I have to roll him over at night and position his legs, arms and entire body. He tires easily. He goes to school from 8 to noon three mornings a week and sleeps the entire day after that. He really can't manage more than three days a week or more than 1/2 of a day of anything. He has a progressive neurological disease.

The good news however is that with his new blenderized diet, made from whole/real foods, he has improved dramatically. Cognitively, he is more alert, more aware and happy. Physically, he is now able to move his legs, kick the ball, sit in his recliner and take his feet to turn the chair around (it's a swivel chair). He is also able to stretch his legs in the morning by himself. He does this every day now and previously could not move them at all. As a matter of fact, I can remember one year when his leg moved and I woke up in the middle of the night, wondering what the noise was.

You can click on the previous You Tube video in my side bar to see just how far he's come.  I also want to thank his LPN Linda at school. She is Dear Son's one on one aide and she works with him every day to do his exercises (which include kicking the ball).  When I look at the old You Tube video and compare it to the new one, it doesn't seem like the same kid!

 Note: Dear Son is 20 years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he also has a progressive neurological disorder.
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