Occupational Therapy has played a big role in Gavin’s development.  On this day, we worked with the “cocoon swing”.  It allows Gavin to work on proprioception, tactile as well as vestibular input.  It helps him to gain an understanding and receive input of how his body works.  I know I say this a million times, but Gavin needs to receive input throughout his whole body, in order to begin to understand just how one part of him works.

For example, every move he makes in this “cocoon swing” is with resistance.  He was asked to push the outside of the swing, with all his strength.  This allows him to gain an understanding of how long the length of his arm is.  When we extend our arms, we can see the tips of our fingers.  When Gavin extends his arms, he doesn’t really have a full grasp of what is at the end of his fingers (other than open space), and so this helps to give a mental map of the length of his arms, and he gets input all down his fingers from the resistance.  It’s such an interesting concept.

His therapist, Mary, also put the cocoon swing under his arms.  It provided just enough support to allow free movement, which is something you don’t see all the time with blind children.  His face was priceless, as he controlled the movement of his legs as he side-stepped, jumped up and down, and ran from side to side.

 

He also worked on jumping from a small height, unassisted.  I was able to grab my phone, and capture this moment.  He was so happy when he did it.  His therapist has been working on having Gavin, jump.  Not just up and down, but off of something of a different height – independently.  This is not something a child who is blind, is going to do.  But it is important for him to gain understanding of open space, and his body position, and using both parts of his body in sync.  There is hesitation, but, he did it!  Many blind children do not want to jump without guidance, as there is definite fear of the unknown, and a general fear for safety.  You can see we still need some work on weight shifting, as well as him lifting his foot completely up in the air and stepping it onto the step.  He keeps constant contact with the mat and the step, as he is trying to get his foot up onto the step.

We are going to continue working with stepping on/off curbs, steps as well as jumping down from them.  I will keep you posted as his development continues.

As a side note, I know I have not kept up with this blog like I would like.  It’s always the first thing to slide when life happens.  But, please stay connected with us, as we will have some exciting news to share in the upcoming days/weeks!

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I can do it.

April 2, 2013

in Uncategorized

Gavin’s “I can do it” video, put us on a fun 3 week press path.  The highlights were being on CNN, and our local news stations, featured on Huffington Post, Good Morning America and the Today Show online sites. With that came over half a million views on YouTube, as well as many comments, and emails that have truly touched our hearts.  We received calls and emails from people all across the world, letting us know they saw Gavin on TV.

With every interview we did, of course they asked about the video, and the background story of it.  But it always led us to LCA, and they always asked about how people can help our mission.  I loved that the most. I am thoroughly touched that our little boy, just by him being, him – has inspired people.  But that same boy is helping us to bring LCA to people who normally would not know about it.

We are especially excited for an upcoming episode of “The Doctor’s“, that will be airing the video clip of Gavin, as well as talk a few minutes about LCA.  A nationally syndicated, Emmy award winning show will be talking about LCA.  We will keep everyone posted, make sure to like our FB page, so you can stay up to date with our upcoming posts.

The most asked questions and comments I have received the past few weeks:

1. Why does Gavin wear glasses if he is blind?  (answer here)

2. Doesn’t the mom know how about VVS?  Now I do. LOL

3. Has Gavin been blind since birth?  Yes

4. This is a fake video, it was staged, Gavin is not blind, and they just want views.  Really? I mean REALLY? ha

5. I’ve never heard of LCA, but I will be more engaging next time I see a blind person.  (melts my heart)

Good or bad, I am so happy this video has sparked conversation about blindness and LCA.  This has been a great fundraising campaign without even trying.  We have received many donations, and the money coming in from views on the video is going towards our fundraising efforts for Gavin R Stevens Foundation.

Thank you all for your support, and emails and wonderful and kind words for Gavin, our family, our charity, and all the other LCA families.    We are so happy for our new supporters, and their expression of love and compassion. You are all contributing to one day filling Gavin’s life with vision.

You have all inspired me!

 

 

 

 

 

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A video I posted of Gavin on our YouTube channel, was picked up by TV producer, who saw it.  I received an email, we corresponded, and 24 hours later, a news clip of Gavin and the YouTube video along with him singing Bruno Mars, was airing on over 45 markets, nationally!

I then was contacted by the Huffington Post, Yahoo News UK, and many other media outlets.  Good Morning Malibu will also be airing it this morning.

The below link is what was aired on the various networks:

http://www.rightthisminute.com/video/blind-4-year-old-gavin-doesnt-need-help

I’m glad they did it in such a great way, they mentioned the Foundation, and did not put it into a category to feel sorry for him.  It was very well done, and we are so happy with it!  The part when he sings with Bruno Mars is pretty awesome.

Since that aired, it has been shown on Facebok, on “Awesome Video” “Funniest Videos” (which there is nothing funny about it, but I know they pick up videos that have a lot of attention, but whatever).  Taking it with a grain of salt (along with the small handful of rude comments).

On YouTube it’s been seen over 14,000 times, and on Facebook there has been a combined total of 50,000 likes, 5,000 shares and over 3,000 comments.  IN 48 HOURS!

A little background of the video, I always take video of Gavin.  I want him to hear certain things back, and I like to capture firsts.  We had been working on him stepping up and down stairs independently for a few weeks.  He went from holding my hand, to holding my pinkie, to me touching his back, to me (on the vide0), getting pushed away.  I wish I got that on video! lol  He shooed me away a few seconds before, so I stepped back, took the video and uploaded it to YouTube a few days later.  Not thinking anything of it.  I share videos on our YouTube channel to raise awareness of LCA, and to share with other families where we are with his therapy, development, etc.

I didn’t think anything of it, but looking back, hearing him say “I can do it” is pretty touching. To me, this is somehting I hear all the time from him, but to capture it on video, when he was very hesitant is pretty cool. My little guy is such a trooper, and is my lesson in bravery, determination and perserverance!

I’m so happy to say this video has been spreading awareness of LCA, our website it getting rocked with hits, the emails have been wonderful, and we have had donations coming in.

Gavin is our rockstar, by just being him!

 

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Rare Disease Day 2013

February 28, 2013

Our Project Sight video ended up having close to 300 individuals participate.  We had photos submitted all over the United States, as well as the UK, Ecuador, Australia, Canada, Brazil, etc… If you lost your sight, what would you miss?  Check out the video for what our Gavin’s Groupies would miss. I have also put all [...]

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Rare Disease Week

February 26, 2013

Rare Disease Day Facts A rare disease is classified as such when it affects fewer than 200,000 of the population. 50% of rare diseases include children 80% of rare diseases are genetic in condition 3,000 people in the USA have LCA 150 have the NMNAT1 gene Gavin is one of the 150 in the USA [...]

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Gavin’s 2013 update

January 30, 2013

The beginning of the year, I wanted to do an update of Gavin.  Just in general, with where he is.  It’s almost the end of January, and have yet to do it.  I want to be better with this blog.  It seems like it’s the first to go when life happens. Gavin is 4, and [...]

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Is it in your belly?

January 25, 2013

I love recording his firsts.   This is his first time chewing gum.  He got the hang of it pretty well, fairly quick.  We have tried again after this, and the times he is chewing, rather than swallowing, is getting longer.  LOL Isn’t it normal to try to pull the gum you swallowed out of your [...]

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Working with Braille

January 23, 2013

Gavin is coming along with his braille.  I sat with his VI teacher, and she went over all they have done and accomplished.  When she first started working with him, he would sit in his chair, with his hands stuck like glue to either sides of the chair.  I know this is a mix of [...]

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Upcoming events – Including Rare Disease Day

January 22, 2013

We have a lot going on in the upcoming weeks.  Below is a timeline of our upcoming projects and events we need your support with. Friday, Feb. 8th – Origami Owl Fundraiser.  If you have not seen these lockets, you have to check them out.  You can create your own story within a locket.  I [...]

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The Durdin Family

January 21, 2013

Here is a little bit about the Durdin family from Australia, and their little girl Shianne.  I introduced Shianne back when we met her in Philadelphia.  She reminds me so much of Gavin!  Shianne also has the NMNAT1 gene mutation.  Just like Gavin, LCA was passed on to her unknowingly from her parents.  I’m so [...]

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