ISO: Keep us in your prayers tomorrow - DD having tests all day for rare eye disorder

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music-city-missy

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She's been diagnosed with a very rare eye condition called AZOOR at the beginning of January - no known cause, treatment or cure. She's already lost about 20% of her vision in her left eye and it can progress.

We saw a Dr. at Vandy Thursday that is probably the foremost authority on it. Dr. Gass there 'discovered' AZOOR so she took over his research when he passed away.

Monday we spend all day there having two tests run that will either confirm that it is AZOOR or not. The if not part may be worse than the AZOOR - they will start looking for brain problems and doing MRIs, etc. if not.

She started an experimental cocktail of drugs Friday - one was $1,300 before insurance and ONLY $300 after. Drug companies and oil companies - I want to go after both of them right now.

Anyway - she's tired of tests and these don't sound fun. Last week's appointment brought fights and tears. So far so good - no fights over going tonight. Let's hope it holds out tomorrow morning.

 
Oh Missy,

it is one thing when it is ourselves, but a whole different thing when it is our children. I will keep you and your daughter in my good thoughts.

 
Prayers offered and hugs sent to all of you. Scary times....

Melissa, 10 years ago, my husband had an occulsion in his right eye. Basically, it burned out the center image forever, so there are times when his vision is very difficult. He has the same potentially damaging condition in the left eye. Plus now he has glaucoma, so he uses eye medication every day to keep the pressure in his eyes in a normal state.

However, considering the alternative, all of this is livable. He can still drive and read, although not as easily as before. I sincerely pray your DD comes away with the same measure of hope.

 
Here are 2 prayers specifically for your husband ~ GOD BLESS YOU ALL

Father, you are good, you are faithful and your plans amaze me. I come before you, asking for healing for Missy's daughter. Please bring her restoration and healing for her eyes. Reveal yourself to them both that their lives and their hearts may be given to you.

Father, consume them with your love, show your self to them so that they are unable to question the truth of your word. I love you and am excited to see what you have in store for this young girl and her eyesight to love and cherish her family through restored vision. I ask of these things according to you will and in the name of your son, Jesus Christ. Amen


Father - you are big, you are bigger than the biggest thing I can think of. You are more powerful than the most powerful person that comes to mind. You are a greater physician than the world’s most recognized physicians. Please bring Missy's daughters eyes healing. According to your will, bless her eyesight. Bless her and her parents and family. Bless all those who care for her on a daily basis and through this crisis, bring people to know you in a way they have never experienced. You are good, and you are faithful. It is in your son’s name, Jesus Christ, I ask these things. Amen.

Second Prayer

I lift up my eyes to the hills- Where does my help come from?
My help comes from the LORD, the Maker of heaven and earth.
He will not let your foot slip -
He who watches over you will not slumber;
Indeed, he who watches over Israel will neither slumber nor sleep.
The LORD watches over you
The LORD is your shade at your right hand;
The sun will not harm you by day, nor the moon by night.
The LORD will keep you from all harm -
He will watch over your life;
The LORD will watch over your coming and going
Both now and forevermore.
Psalm 121

 
Update - still no answers. More tests in 3 weeks & 6 weeks until Dr is back from India.

Our luck, the test that was supposed to be conclusive one way or another wasn't.

After confusion with the tests this morning being scheduled in the wrong order and such, we got out of there with more frustration and no answers. We did get to see the doctor a few minutes since she is leaving to visit her family in India later this week – there was also confusion over whether we were supposed to see her or what. I just knew it wasn’t fair to have to wait 6 weeks for any answers or results.

She told us that while the ERG did show slight variances in her eyes, they were still close to being symmetrical which is not typical of AZOOR. So for that reason, we now have to see an ophtho-neurologist or a neuro-ophthamologist, something like that. DD lost it at that and left me at the front desk after begging me not to make her go to any more doctors.

By the time we got through eating a late lunch and letting her get her frustrations out and watch tears come to her eyes over not wanting to go to any more doctors, she calmed down some by the time we got home and just begged that I change the appointment away from her Spring Break which I had tried to do but the receptionist wasn’t cooperating. So I’ll just call back and try again.

So end of the day, we still don’t know what is causing this, what it is, and such. Hopefully the ophtho-neurologist will be able to tell us something in a few weeks before Dr. Agarwal gets back. If not, it’s going to be a long 6 weeks.

Thanks for your prayers and thoughts!

Melissa

 
She turned 16 in Sept & she'll finally get her driver's license in a couple more weeks...

and actually it was her drivers' ed class that it bothered her the most one day when sun got in her other eye and then she didn't see something out of the corner of this eye.

 
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