The heart see's what's invisible to the eye.
- H. Jackson Brown Jr

About Me

My photo
Doug was born on September 1, 2010. At 2 months old he was diagnosed with Optic Nerve Hypoplasia(ONH). ONH is when you have an under developed optic nerve causing vision impairment. In Doug’s case, his optic nerves are about 75% smaller than average size. We were told there was nothing we can do to improve his vision, but we refused to believe that was it. After hearing about stem cell treatments being done in China, that include multiple injections & various therapies, we began fundraising. We were able to raise enough money and went to China end of July, 2012. Since then we have noticed multiple changes in Dougie's vision. He is responding to things double to triple the length he was prior, and also reacting to different colors that he had never responded to prior to going. We are ready to go back and have began fundraising for more treatments because we feel they will only improve his vision more. These treatments are not cheap and insurance does not cover any of it. Starting at $24,000 plus travel and expenses, we need around $40,000 total. We did it once; we know we can do it again! Please help us create this MIRACLE and help give our son the gift of sight.
*******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure******* *******NO EMBRYONIC CELLS are used during this procedure*******

Monday, June 3, 2013

Been to Long!

It's amazing to us how fast time goes by.  Feels like it hasn't been that long since we've updated but here we are 6 months later! Boy has Dougie grown in these last 6 months. He keeps mom on her toes at all times and is learning so many new and exciting things from stacking blocks to naming colors! 

I'll start with how his vision is growing and getting stronger because, lets face it, that's what we all want to hear about! Since our trip to China we continue to notice changes every day. He not only gets around the house even better than before he is visually pointing things out with his favorite saying 'Do you see that?' He says this a thousand times a day to everything!  Do you see that orange painting? Do you see the light? I see that fan, do you see the fan? ... Not impressed yet? Maybe him naming colors will. Check out this video of him naming the colors of his blocks. You can even hear the surprise in mom and dads voice when he is able to tell orange from yellow or red.
This may seem like such a little detail to some but it's amazing to know he sees enough to know that the orange is not the same as the yellow!
 
He is also a little book worm and can pick up any book we read regularly and know the name of it by looking at its cover. This is a big thing too! It all is and it wouldn't be here with out all the help we got! He can also open those book and 'read' that page according to what image he sees.  
We have finally gotten to the eye doctor for Dougie. For a while we were having insurance issues and because of those issues we weren't able to see the same opthomologist we saw previously. But his new doctor was impressed with the skills Doug has and was able to tell how much he has improved according to the notes from his previous appointments. They did a quick flash card test and he was able to find the striped lines on every card. After covering an eye each he showed us his right eye is still much stronger than his left eye and we left happily with a script for a pair of glasses. From what they can tell Doug's actual eye  is near sighted. That basically means that if his optic nerves didn't have any problems he would have still needed glasses to help him as any other child who needs glasses would.
 
 
 See that face? Who would have thought he could get any cuter... Throw some glasses on this boy and he goes from handsome cutie to sophisticated handsome cutie! 
I feel like I'm missing a thousand things about his vision. He amazing us daily and it's hard to keep track of the new and exciting things when it quickly becomes 'old' and there is something else to be overly excited about.


Since our last update we have been working just as hard if not more to help Dougie be the best Dougie he could ever be. We had been noticing he seemed a little more weak in his shoulders and  other big muscle groups which can also effect his fine motor skills such as pinching, stacking, control to use a fork and other areas. We decided it was best to bring on a physical therapist(pt) and have been seeing one weekly now, since January. He is now hanging on the monkey bars, play catch, and wheel barrel walk all over! We've also noticed since he is getting better in those areas he is now getting better with those fine motor skills like we were hoping would happen. He is stacking blocks up taller than himself, growls like Godzilla, stomps his feet and knocks the city over! He is starting to use spoons and forks more often, although he still needs help with it, and he uses those pinching fingers when it's absolutely necessary (like a zipper or to pick up a small coin). 
We have also added speech to his therapy and his vocabulary has tripled since. He loves to label things and uses that as a way to communicate (ex: 'Tunnel? Tunnel?' Means 'open the tunnel please?'). We now make him use even more words to get his point across (such as 'want tunnel open?'). 

Early intervention follows children up to 3 yrs. old and then help transition them to school. Sadly, with Dougie turning 3 shortly, we have now also started this whole process. He will be starting school September 5th of this year! This makes mom sad but we know we have to do what's best for Dougie even if a big yellow bus seems to scary! To help him be prepared for his new 5 days a week school year he has been going to an Enrichment class at Little Sports and seems to enjoy himself!
 
He is such a big boy now!
 
We also just started working with a mobility specialist who is helping teach Dougie to move more confidently around the house, neighborhood and anywhere else we seem necessary. She brought over his very first cane and  He started using it the right way almost immediately (should We have expected any thing less?). He likes to explore its his cane and with that he is leaning his ways to use it. When we go out the front door he asks for his cane immediately! 
 
 
All in all Dougie is doing really good! He is molding into the man he will become and he is such a ham. He loves to laugh and to make people laugh and loves being the center of attention.
 

As of fundraising, we are fully loaded with life as of right now and even though we want to be full time fundraising we just aren't able to give it the time we need. Obviously as this update was well overdue! We know we will get back one day again to help him even more! Thanks for supporting us and our decision! We are so happy with the results we have seen and can only hope for more to come and to get back to China as soon as we can!
 
Here are a few pictures to give you an idea of what we've been up to:
 
First time boating. His favorite
 part was going fast!
 
We enjoyed a night at the Maple Shade
 carnival. His favorite ride was the
 bear affair (like the teacup ride)
 
We got family pictures done on Mothers day.
 
He had a lot of fun and it was an awesome day!
 
We like to fly our little people to China!
 
I have no words!
 
We gave this picture to be in a slideshow
 video about people with disabilities.
 
He is sure getting daring! Holy Heart attack!
 
Some spring time fun (although
it feels like summer already!)
 
 
 
 
 
Until next time.........................

4 comments:

  1. Hey my name is Megan and my son Levi too has ONH and me and my husband were very interested in.learning more about this treatment and the steps we need to take to get there. Please email me soon.. Coleman.md2013@gmail.com thanks!!!

    ReplyDelete
  2. Hello my name is Alicia. My son just turned 8 yrs old. He also has ONH. I am inspired by your story and would love to learn about the treatment your son received and the steps I could take. Please email me at Alicia.m.vorva@aol.com

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  3. Hi My name is Lisa and my 3month old son was diagnosed yesterday with ONH.
    I am so happy I stumbled across your blog as you have given me some hope that everything will be ok.
    Can you please email me lisa_b1979@yahoo.com.au as I would love to hear more about the steps you have taken as the Doctors here in Australia have told me there is no benefit from stem cells and we just have to deal with what we have been given. This whole thing is petrifying me and I've spent the last 24 hours in tears.
    I would love to hear from you, if you are able to respond. Sending your family much love.

    ReplyDelete
  4. Hello, how is Douglas doing today?
    My son has the same case, would love to hear your feedback about Dougie today? And we have high hopes for our son too. My email sipuc20@hotmail.com. Hope you have time to answer, looking forward to it. Lots of ☀ and love!

    ReplyDelete