Friday, March 30, 2012

Story of the Blind Child

In May 2006, our second daughter {Peyton} was born.
She was born with multiple special needs.
Among the long list of medical issues she faced was that she had cataracts!  Who ever heard of a baby being born with cataracts!?!?  At two weeks of age, Peyton had two separate surgeries to remove the cataracts.  During the surgery, the lenses of her eyes were removed, leaving her what they call "aphakic" {uh, that's med-speak for "she has no lenses in her eyes"}.  The goal in that moment was provide Peyton with some sort of sight immediately or else her brain would shut down that part which controls vision.  After birth and up until surgery, she was completely blind.  The cataracts left her with no sight and no incentive to open her eyes.  The picture of Peyton below was taken during her first days in the NICU {I'm totally jealous of all that hair and the highlights in her hair...at birth!!!}

Post-surgery, Peyton was able to open her eyes and "see", but she has since been considered legally blind.  She will be 6 in May and, to date, she is still aphakic.  I am not sure if her having lens implants is an option.  At a visit to the ophthalmologist last week, the doctor found there there is little left of the "lens capsule" in her eye which, had it been him doing the surgery {it wasn't...we moved to Charleston from Houston when she was 2}, would have consisted of more of this material so that he could have something to sew an implant to down the road.  I didn't catch if this means it's not possible or if it means it would just be more extensive surgery.  Anyway, once the cataracts were removed at 2 weeks of age, Peyton was fitted for glasses and contact lenses!!  Her little glasses were teeny tiny little bi-focals, which she wore in addition to her contact lenses.  You see, her vision was so poor that there was no single contact lens powerful enough on its own to provide sight for her.  As for glasses, there was no way an infant could hold glasses with lenses the thickness of the whole prescription on her little face.  So, we did both together.

As Peyton grew, it was decided that her prescription could be brought down to a level that she could wear in a contact lens, so we gave up the glasses for just contacts.  We did soft lenses.  We did hard lenses.  We did soft lenses again.  During her first year, she had close to 10 eye surgeries.  She developed glaucoma after birth and required several corrective surgeries, which didn't actually correct the problem.  She wound up having shunts placed inside her eyes.  If you are familiar with hydrocephalus - "water on the brain" - people will often have a shunt placed in their head to drain fluid from the cranium to reduce pressure on the brain {yeah, Peyton has that too}.  The shunts in her eyes are right inside her eye balls and they function just like the shunt in her head does, except they drain excess fluid from the eyes caused by the glaucoma.  She also has micropthalmia which is a condition where her eyes are smaller than normal.  She just plain has major issues with her eyes.  All that said, her eyes aren't a typical curve like most people's and contacts don't sit quite as nicely as they should.  They pop out a lot.  We replace them.  A.  Lot.  Currently each lens {read: one lens, not one pair} costs about $180.00.  That's $180.00 down the drain every time one gets rubbed out, falls out, misplaced, etc.  I shudder to think of what we've spent on contacts in just 5 years' time.

The contact lens.  Super duper thick at the bottom of the curve.
Anyway, at this last opthalmology visit, the doctor decided she was ready for glasses.  He was able to figure out a prescription for her {don't ask me how...it's not like she can say what's clearer - A or B}.  He highly recommended we get glasses as a back up and that we maybe try to transition her to glasses altogether.  Over time, her prescription has drastically reduced - simply by the fact that she's growing.  She's still legally blind and still requires a massive prescription.  The problem is, how do we keep glasses on her??  Well, there are a couple companies - MiraFlex and Solo Bambini who make frames for kids which are wonderful - they are a special type of plastic which is extremely flexible and virtually indestructible.  We went to the optician and he recommended the MiraFlex frame for Peyton.  I received the call yesterday that her glasses were ready and I ran down there and picked them up.  $288 dollars later, here is my precious Peyton in her "big girl" glasses:

Hmm...not too sure about these things

Ok...this is not her best face forward,but it was cute all the same!

Ta da!!  Friends, I cannot tell you how hard it is to get a pic of her looking AT you!
 I am just so excited about these glasses for Peyton.  First, maybe we can ditch the contacts soon?!?!  I don't mind putting them in and taking them out, but they do irritate her eyes sometimes and they get really filmy - and there's nothing you can do about it.  It's a downfall of the special material they are made of.  If they're filmy at all, then they are hardly worth wearing, but she has to.  Second, we now have a back up if we do lose a lens - she'll be able to see in the meantime while we wait on a new one to come in.  Third, $288 a pair vs $180 a lens?!?!?!  Fourth...

Let me tell you this.
When I put these glasses on Peyton for the first time, I was afraid she's react poorly and just try to swipe them off her face.  No.  She laughed.  It was like she was seeing things around her for the first time!!  It made me wonder, just how bad is she seeing with those filmy contact lenses???  She laughed.  The nurse held a mirror up to her and she laughed hard.  She was reacting to things in a way I haven't seen in a long time.  Sure, it is going to take some getting used to.  Ok, a lot of getting used to.  But I was so encouraged by what I saw right off the bat.  As hesitant as I was about doing the glasses thing with her, I am just so overjoyed and thankful right now!

I wanted to include a song that had something to do with the blind seeing, and the only thing I could think of was "Amazing Grace" which is not one of my favorite songs.  Sorry to any Amazing Grace fans out there.  BUT then this song came to my mind and I love it!  Listen to it if you like!






linking up:
bits of splendor monday
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1 comment:

  1. Wow, Sarah. I am in awe of your love and patience with this precious little girl. I know it is probably thankless and exhausting much of the time, but your service and devotion to her must be so very pleasing to God. You are inspiring. God bless you and little Peyton.

    Amy

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