Wednesday, June 5, 2013

Some Resources for Congenital Cataracts, infant contacts, glasses, and patching!

I've been getting requests for ways to "plug in" to other people going through the same thing.  I remember scouring the internet for any snippet of information I could find, so here is a compilation of things that helped me through!

Parent Blogs:  

In general, these tell about family life surrounding having a child with cataracts.  Many talk about day to day struggles with patching, contacts, glasses, and also about family fun!  These blogs help me survive the ups and downs of what we go through.

Here are the ones I follow regularly (forgive me if I missed any, I'm sure there are more!)






There are many more beautifully written blogs out there by moms who have children going through similar issues.  I omitted a few who have either not blogged recently, or those who have changed the focus of their blog away from congential cataracts (etc) and more towards family life or interests.  You can find a few more in my profile and I do urge you to check them out!

Websites:


Little Four Eyes:  This covers issues with any kid in glasses. http://littlefoureyes.com/
  *They also have a Facebook page:  https://www.facebook.com/groups/littlefoureyes/


Child Cataract Network (UK site) http://www.childhoodcataracts.org.uk/index.html

Bausch & Lomb:  I included this, because if you have Silsoft lenses, you will contact them at some point!  http://www.bausch.com/en/Our-Products/Contact-Lenses

Boston Children's Hospital:  Not where we go, but they have a GREAT video on how to put in contacts... I watched this a million times when we first started!  http://www.childrenshospital.org/az/Site666/mainpageS666P1.html

Simulation of vision:  Really cool site.  http://www.billauer.co.il/simulator.html

Facebook Pages:  

Closed groups: You need to request access, which is easily granted, but this makes it a little more private.

People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite! https://www.facebook.com/groups/58073768937/

Aphakic kids:  https://www.facebook.com/groups/139232330344/

Aphakia Group:  https://www.facebook.com/pages/Aphakia-group/121745891227537

Fun Sites (Mostly promotional):

Peeps Eyewear: https://www.facebook.com/peepseyewear?fref=ts

Eye Power Kids Wear:  https://www.facebook.com/eyepowerkidswear?hc_location=stream
  *They also have a non-facebook website:  http://eyepowerkidswear.com/

Little Four Eyes Marketplace https://www.facebook.com/groups/359677530776131/?fref=ts

Instagram:

Check out #Camopatch kids!  Many parents (and some siblings!) will post pictures of their kiddos in patches on Sunday.  Camo patch if you have any!

Patches:

See earlier post:  Fun Eye Patches

Support Groups:

 Yahoo Aphakic Support Group.  You'll need to request access, but this is a great resource.  You can post questions, answer questions, or simply read about what others are going through.


Little Tommy (just because I can't post without at least one picture!)

12 comments:

  1. The only thing I have to add is that my email address is missyadams@ymail.com. My blog, vision is a gift, is private. I would be more than happy to send an invite to anyone that is interested in reading my ramblings. :)

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  2. Thank you so much for this! I am so grateful to have all this information And have others to reach out to!

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  3. Great post!

    Love the pic of that boy!

    And, I think my blog is more about my random life than anything, but the EYE is a pretty big part of it, too, I guess!

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  4. This post is so thoughtful and resourceful, you go super imom!!! I'd like to add that Tommy is the best part of the post though! ;)

    Love seeing him rock "real" camo on #camopatchkids Instagram Sundays. Now that Ortopad allows pick-a-patch we have literally a year supply... we have ammo for camo LOL!

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  5. Wow!!!! Thanks do much for this post! My daughter Seraphina was diagnosed with a congenital cataract. She's 9 months now and I've spent all this time looking for information and other parents like me! Thanks so much for sharing!

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  6. Does congenital cataract in one eye can slow the developmental growth too .. Like delayed 3-4 months in pointing things, asking for something, looking at u, communication skil suggest

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  7. My mother had cataracts before she died. I know that she had surgery done that really helped her out a lot. Thanks for sharing your experience!

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