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.  http://www.youtube.com/watch?v=28cz65fWPW4

5 comments:

Earl said...

That's great! You both should be proud. His progress represents a lifetime of work.

Dream Mom said...

Thanks, Earl! Yes, I am so proud of him!

Christina said...

Dream Mom, I've followed your blog for a while-I think I found it through various Medical Blogs that I read when I was working as a nurse, but I've kept you on my Reader even though I am not working anymore, as I enjoy your updates on Dear Son. Have you thought about putting your tips/techniques, etc for his blendarized diet into a book form- maybe an e-book? I know that there have to be many families with SN kiddos out there who would love this information. My husband is a pediatrician and when I shared your recent post with him, he said the same thing. Even if families could replace just one feed with fresh foods that might result in much better health for their kids. Just something to think about- I think that the results are amazing and your work on figuring out how to do it deserves to be shared.

Dream Mom said...

Thanks, Christina. Yes, I've thought about doing an e-book and will probably start it in a few weeks as soon as I finish a current project I am working on. That is one of the reasons, I haven't gone into a lot of detail around it on the blog.

I agree, there isn't much out there and I think my system is not only really easy to implement, but it would be just as easy to do if they are hospitalized.I have to agree too, even one meal a day is good to start. I have put together an outline and some notes regarding the diet for an ebook and I am excited about it. I really believe blenderized diets should be the norm for these kids; I only wish I knew about them sooner. And you are right, there is virtually nothing out there on how to do these diets. I know when I was looking at how to do these, most just did the exact same ingredients every day and a few just gave them what the family was eating. I think my system is better than both approaches because I vary the foods more. I can feed Matt (Dear Son) fruits and vegetables that are in season, plus it's great knowing he gets 11 servings of fruits and vegetables/day. It's also a great feeling knowing that everything I make him and everything I feed him is healthy for him and is building his immune system. Once I saw the cognitive changes, along with the weight loss and the acne clearing up, I knew I was onto something great. It's great too because Matt seems so much more satisfied with this diet. He no longer wakes up early (hungry) and he sleeps so much better.

Recently, we saw his GI doc and he told me three times in the visit not to change anything in his diet because he looked great. When we saw his neuro a while back, he said it was the best he looked in years.

Thank you for taking the time to comment. I really appreciate your input.

Dawn O'Neill said...

I am so happy for you and Dear Son!! He looks so happy and playful!! Both my children have been on the bleanded diet for over a year now and they have been taking coconut oil for almost as long. They have not had a major illness since (knock on wood!) and they just seem so much stronger and happier. I love cooking for and feeding my children real food. I did read a good book that helped ma along the way
http://www.amazon.com/Complete-Tubefeeding-Everything-tubefeeding-nutrition/dp/1470190222
but you are right, there isnt much info out there
Best of luck to you and your beautiful Son!
Dawn, Emma and Keith's mom :)

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