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Jenna's eyes--long

When we adopted Jenna, we knew she had microphthalmia (underdeveloped eyeballs).  One year ago, we were told that her vision should remain stable  in her right eye, her left eye really sees nothing.  This year, her visit to the low vision specialist revealed she had lost ALOT of vision over the past year, so we needed to find out why.
                                             After much testing, we know these things: 
                Her corneas are cloudy (glaucoma), this can usually be fixed.
                               She has cataracts forming, this can usually be fixed.
                                                 She has PHPV, this can usually be fixed.
 PHPV is Persistent Hyperplastic PrimaryVitreous.  The easy definition is this:  In early development of the eye, there are vessels that form a stalk to supply the forming lens with blood.  When the job is done, they disentigrate.  In someone with PHPV, it does not disentigrate, the stalk causes scarring in the vitreous and the back of the lens capsule.  Every case is different, but usually good sight with glasses can be obtained, so This can usually be fixed.
 

She also has extreme nystagmus, constant twitching of the eyes.  Actually, Waid's twitch, Jenna's scan from far left to far right constantly, so hard to get a picture.
 It's hard to tell, but can you see in the picture above that pupil and iris look small, and cat-eye shaped?  This is microcornea.  Her corneas are about 3mm across, a normal eye is 12mm.  Because of this one thing, the doctors cannot see into her eye enough to do any surgeries.  Because of the microcornea, NONE of the other things wrong with her eyes can be fixed.
                                          What this means, is that, short of a miracle,
                                         Jenna will be completely blind in under 3 years,
                                              based on the rate that she lost vision last year.
                                              She will be blinded by glaucoma and cataracts.
In June, the doctor, who last year said we need not worry about Braille, with all the other technology available, and with Jenna's CCTV, she wouldn't really need it.  This year, that same doctor looked at me and said "learn Braille--FAST!"  So we have a lot to take in, and learn.  Last year her "good" eye was 20/500, this year it is 20/1280. (20/200 is legally blind)  At 2" from her eye, words have to be 6.4M, or 6.4 times the size of newsprint for her to read them.  She cannot see me when she walks into a room.  She cannot tell that someone is talking directly to her (sitting right next to her), unless they say her name.
(Pictured above, you can see that her eyelids did not form properly also,
she always looks like she is squinting.)
Of course I believe in miracles--have seen them through our adoption journeys!
I know our God can heal her if he chooses.  BUT, as responsible parents, we must prepare Jenna for the worst case scenario.  Emmi has volunteered to learn Braille with Jenna, by feel, I will learn it by sight.  Jenna is not currently in cane training, but I am purposely  not holding her hand on errands, and making her depend on her cane more. 
Wow, I don't know what else to say, we're still digesting it all, and figuring out a plan of how to teach her things.

6 comments:

  1. Oh Janet. I don't even know what to say except I am so sorry that she is having to go through all this and that your family is too. I will pray for Jenna's healing. Please call if you just need to vent. And I would love to have you come or have a park meetup.

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  2. Anonymous9:22 PM

    So much to digest for your family. Praying for your family. ((hugs))~Trina

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  3. Sorry for the bad news! Praying for miss Jenna that she can see for more years to come and that Braile will be easy for her to learn.

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  4. Praying for you all!

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  5. Praying for sweet Jenna!

    Amy P.

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  6. Joyful God chose you and David to be Jenna's parents. May God continue to bless your family!

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