Never As We Expected

In my last post, which was the last time I was able to put fingers to keyboard, we were waiting for more testing to see if our sweet Gigi was facing the possibility of progressively worsening vision or if the changes in her retina were something she was born with.

For two weeks, we have bitten our lower lips and waited to see the Eye Team at our local children’s hospital again.  During these wait and see times, and we’ve been here before, it’s hard for me to write.  Mostly, because there is nothing to say, nothing to do, there is only here and now.  Here and now is so hard for me. I’m a planner and an over thinker.  I’ve never been a ‘live in the moment’ kind of gal.

These moments have left me with no choice.  It’s one of those things that my kids teach me as we move through life.  One of those lessons that ultimately I’m grateful for, but that in the moment, are so very hard to endure.  I would be such a different person without these kids.

We had our visit today.  I took Tess with me, hoping she could show Gigi some of the things they were going to do and demonstrate that they weren’t painful.  She did exactly that.  One test involved projecting an image on a screen about 20 feet away and then pointing to the matching picture on the card in front of you.  Basically, it’s an age appropriate way to test your vision without that eye chart with letters.  We had an interpreter, but Tess, God love her, was able to point to the picture for Gigi while Gigi sat in my lap, point to the card, ask her ‘which one?’, and get an answer from Gigi.  Once Gigi caught onto it, Tess signed ‘game’ and Gigi more than happily played the “matching game.”  In fact, Gigi blew everyone out of the water.

“How long has she been here?” the APN asked.  Three months yesterday.  AMAZING.

We then did a test where we hooked electrodes to Gigi’s head and measured her brain’s response to images changing in front of her.  We had to patch each eye to get individual results.  She wasn’t super pleased about any of this.  Tess let us stick electrodes to her head first, even though she declared it was “ruining her hairdo!”  That girl!  She sat next to Gigi the entire time, matching electrodes dangling from her head, and signed to Gigi because I was behind Gigi and she couldn’t see me.  The interpreter was stunned by the amount of language Gigi responds to from Tess.  The results of this test were ultimately very surprising.  First, they could see a thick cataract coating Gigi’s left eye, her “bad eye.”  The eye does respond to light, but that’s about it.  Because the eyeball is structurally small, there isn’t a lot that can be done for it, even if they did surgically remove the cataract.  We didn’t know about the cataract before today.  Good to know.

The right eye, Gigi’s “good eye”, yielded even more surprising results.  Her vision is 20/20.  The small cataract we all thought she had in that right eye doesn’t exist.  She sees PERFECTLY from the center of that eye.  Her peripheral fields are a bit of a mystery, but overall, she is ROCKING it, visually speaking, but in all other ways as well.

We then went and attempted to take a picture of her retina in her right eye to address the changes that the eye doctor thought he saw on last exam.  This didn’t work out so well, even with Tess modeling.  She just can’t hold her eyes still, and I can’t really blame her for that.  When your only means of communication is visual, how are you really going to hold still?  The eye doctor got creative and used an app on his phone to take a picture into her eye.

Then, we waited.  We waited while three people put their heads together about our girl.  They reviewed all the results.

They do NOT believe Gigi’s vision loss is progressive.  

They do NOT believe she will lose anymore vision.  

They have yet to find the reason for Gigi’s eye defect in her left eye, but were she effected with a syndrome that caused hearing and vision loss, it would be highly unlikely that she would have 20/20 vision in her right eye.

We will continue to look for genetic answers for Gigi’s congenital heart defect, visual impairment and hearing loss.  For now though, they would like us to see them again in June for a repeat of the tests we had today.  This will tell us if there is worsening.  For now though, they are very convinced that any retinal pigmentation changes that are seen are due to malnutrition.  We knew Gigi was severely malnourished from her lab results.  These results are consistent with that.  We are told they are cautiously optimistic that her hearing and vision are what they are always going to be.  I am so happy about that.  We adore Gigi, just the way she is.

I am looking at this as one more miracle on a long list that we have been handed.  I have no idea what I did to deserve any of this.  Not this child, not the easier life that this will ultimately lead to for her.  I don’t deserve any of it.

She does though.

She absolutely does.  They both do.

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They all do.

The thousands more that wait in institutions all over the world, they deserve the easier life.  They deserve the family.  They deserve the cautiously optimistic miracles, and the huge overwhelmingly amazing miracles.  They deserve the language, the nutrition, and they deserve the love.

I volunteer for a wonderful group of advocates over at Red Thread.  These women work tirelessly to shine a spotlight on kids who wait for their miracles.  This week we celebrated World Down Syndrome Day together.  If you watched our journey to Gigi, you’ll know that Cam and Brady had their hearts absolutely stolen by several of her preschool classmates in China, most of whom have a Down Syndrome diagnosis.  These kids are some of the most overlooked when it comes to China adoption.  They’re not chosen nearly as often as they should be.  They wait much longer then they deserve to.

Currently, there are 34 kids listed on Red Thread’s site alone that have Down Syndrome and are all waiting for someone to show them an easier life.  You can go and see them here.  And, as always, if you’re interested in adoption, especially of a waiting, special needs child in China, you can contact me through the blog.  Even if your heart is somewhere else in the world of adoption, drop me a line and I’ll see if I can find you some resources.

–FullPlateMom, whose next big miracle, God willing, will come for Gigi’s heart.  Cardiology will see us in early April!

 

 

 

One Comment Add yours

  1. Gretchen says:

    Praise God from whom all blessings flow. What a cherry on top of my Holy Week. And that Tess…What a perfect idea to bring her. She’s been through so many appointments; now she leads her sister. ❤

    Like

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