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!)

A boy. His brother. The mischief they find. http://thegloverfamilyblog.blogspot.com/

Epis, Patches, Inhalers... Oh My! http://3kids1wish.blogspot.com/

An Ounce of Luck and a Pound of Faith http://ounceofluck.blogspot.com/

Vision is a Gift http://visionisagift.blogspot.com/

See the Distance http://seethedistance.blogspot.com/

 Patches, camo and other random thoughts  http://patchesandcamo.blogspot.com/

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 have a great post about other blogs:  http://littlefoureyes.com/2012/01/16/new-page-blogs-about-childrens-vision/

  *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!)

Patching Works!

We went for another follow-up visit to the ophthalmologist (1 month post-op)... and finally had some good news!  Tommy's original contact prescription was +32 diopters, at the last visit it changed to +23 D.  That is a significant change!  To put it in a little perspective, a typical farsighted contact prescription for an adult would be ~+3.1D.
While Tommy's prescription is still a HUGE correction, it represents positive results!  The doctor and the nurse were impressed with his progress.  He patches 2 hours per day,while not easy, it has been worth it!  They also mentioned that his eye was getting bigger- more good news!  Since he has PHPV it is (was?) possible that the eye wouldn't grow.  So, the eye is growing and seems to be improving.  We won't be able to tell his real vision prognosis until later, but for now, I choose to be optimistic!

First Day of Contacts!

The contacts finally came and it was time to put them in.  Tommy's dad had put the contact in fairly easily in the office when they were showing us how, but it had been over a week since that tutorial.

We had everything ready, he took the contact out and wet it, just like he was shown in the office.  He folded it like a taco just as he was told.  He pushed his upper lid up and tried to put it in... and no go.  Tommy screwed his eyes up tight and started fussing.  Tommy had gotten very tolerant to the eye drops and eye ointment he's had to use over the past two weeks, but when he scrunches up his eyes, it is nearly impossible to open them.  This was one of those times.  The stress was palpable- I felt terrible for both of them.  I could only imagine how frustrating it was for his dad- and poor Tommy probably felt tortured.  About 5-6 tries (and much stress) later, he tried and it was in- or at least it wasn't on his finger anymore.  But, we couldn't see it in Tommy's eyes.  (It was hard to see anything since Tommy was closing his eyes up tight).  We let Tommy have a short nap and looked around on the floor (just in case).  When Tommy opened his eyes again- we STILL couldn't see it.  Now were were starting to sweat.  This was our first try- and we couldn't see it.  His dad THOUGHT he saw it up high, be we couldn't be sure.   (Remeber, these babies are $500 each!)  We decided to call the ophthalmologist office for advice.  We were thinking that we'd probably have to go to the office the next day and have them remove it or look at it or something.  When I finally got to talk to the nurse, I hear "There, I see it, it is on his eye now!".  What a relief!  Even though I had to stammer through something to discuss with the nurse (I just asked what we should do in the future if it gets stuck high in the eye), I felt MUCH better that it was in.

There is a great video posted on YouTube from a mom who has two sons in contacts:  http://www.youtube.com/user/suebhoney2672
She is incredible- we've watched this a few times.  Maybe I can convince my husband to make his own video since he is so good at it!  I thought about taking pictures this time, but I figured he would nix that idea.