Friday, July 19, 2013

Unexpected Vision

Today was Mercy's first Ophthalmology appointment.  I would say she did great all things considered, but we did have a few meltdowns, however, if I were her I probably would have acted the same way or worse.  We left the house at 6:30 this morning so just having to be woken up from a deep sleep in the early a.m. should have been enough to make one grouchy.  But she was all smiles and even fell back to sleep for a bit on the car ride to Philly. 

Mercy was examined by two resident doctors as well as Dr. Mills who is her assigned ophthalmologist.  She also had a Teller acuity test done.  Overall it was a really great visit.  She had a few meltdowns with nurses and doctors touching her eyes, shining bright lights in her eyes and probably the worst meltdown came when they put the dilation drops in her eyes.  She had to be restrained for that and it did not go over well.  In the end we are very happy with this doctor.  On a side note, I will not let resident doctors be involved with examining her again in the future.  I will only allow them to observe the doctor's exam.  It was just way too many people for her to deal with and way too many times of having a bright light shined in her eyes.  I know resident doctors need the experience, but they will have to find someone else's kid because mine is off limits.  I didn't really realize that these resident doctors were only satisfying their curiosity and education and the "real" exam came from her actual ophthalmologist, yet they all examined her in the same way.  So she basically got examined more than once today.  Wish I had caught on sooner so I could have put an end to it. 

Most of what the doctor reported today was very encouraging news.  Mercy's acuity tested 20/190.  To be diagnosed as legally blind your acuity needs to be 20/200 or more.  For us this was an answer to many many prayers.  I want to be sensitive about this because I know many families who have children with Albinism that are legally blind and even a few adults who are as well.  And this doesn't change their quality of life, they actually live very normal healthy thriving lives and do many if not all the same things as children with 20/20 vision do.  If Mercy had tested as legally blind we were completely prepared to deal with whatever that would mean for her, actually, we were expecting it.  I think it is safe to say any parent wants the best for their child so I wholeheartedly rejoice that she is not.  But this doesn't change the fact that the girl has some serious vision impairment, and it also doesn't change her eyes sensitivity to sunlight.  My prayers for Mercy have always been that her vision would be on the better end of the scale.  Whatever the case, in my heart I prayed and God has answered and I want to give him the glory.  Her vision is just above the mark with an acuity of 20/190 without correction.  She is getting a pair of prescription glasses and we are hoping that will improve her vision a little bit more.  As for her light sensitivity, we will also get her prescription sunglasses because the transition lenses do not tint dark enough to give her the best protection when outside in bright sunlight.  The down side to this is that insurance will only cover one pair of glasses and we will be purchasing two.

I can't say enough about this sweet little girl.  She is defying all odds.  When we accepted her referral and chose to adopt her we never imagined we would become the parents of this feisty, sassy, extremely smart little girl.  But she never ceases to surprise us.  Everyday she learns something new and I absolutely love that I get a front row seat to watching her grow, thrive, develop and blossom.  It is a blessing beyond words.  

After her appointment we then headed to the third floor for her blood work.  She SCREAMED.  Everyone in the waiting room could hear her and a few "awes" were whispered amongst the crowd.  We will not hear the results of that until next week.  Please pray that her iron levels have increased.  Our next stop is genetics on August 2nd. 

Happily waiting for her exam. 

Snacking in between waiting.

Mommies turn to sit in the exam chair.

These animals moved and made noise when the doctor pressed a foot pedal. 

Playing in the waiting room waiting for the eye drops to dilate her pupils.

Daddy playing pirate with her headband (a.k.a. desperate entertainment)

One of a few meltdowns.

And another meltdown.

Pooped out is an understatement.  The arm she is holding out is the one they drew blood from.

Getting fitted for her new glasses.


3 comments:

  1. Thanks for the update Jane! Great news. Cool glasses! kim r

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  2. That is the HARDEST part of being involved with a teaching hospital - I wholeheartedly GET it. I get why they do it and why they need to all give the exams their own attempts... but I think, if I were facing such extreme senstitivity in my child, I'd have the same rule. "Hands off" till the "real" exam :)

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  3. Great report!!! I LOVE her glasses - what a cutie pie!!!

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