That, that sound, was the sound of the other shoe dropping. It has been coming. I have said it before. Things cannot possibly go this well indefinitely.
Azure is still thriving, she is still smart, she is still pulling herself up to standing (and letting go occasionally) every chance she gets and crawling all over the place. She is smiley and babbling like crazy.
But...
Houston, we have a problem.
Yesterday was our follow up visit with the pediatric ophthalmologist who has been checking her for ROP since long before she left the NICU. She initially had Stage 1 which cleared up on its own and her retinas are just fine now.
But...
She is showing more than one symptom of having Duane Retraction Syndrome, Type 1. A congenital neurological disorder of the eyes that appears in only 1-5% of the population. In essence it is a birth defect caused by a teratogenic experience somewhere between 3-8 weeks gestation. (Common causes are Thalidomide or Fetal Alcohol poisoning, neither which explain why Azure has this.) The only thing I can come up with is that 4 weeks past IUI, I was in my first ever car accident when an elderly couple T-boned my car while I was out at lunch one day. The day before my "6 week" ultrasound at the RE's office. Could that car accident be the cause of Azure's eye disorder? Not the actual impact, I walked away without a scratch (though my head was a little tender where it hit the side window), no big deal, but what about the stress and adrenaline? My car was fixed and back on the road in about a week and as far as we could tell there were no consequences for the pregnancy at the time. (The other driver was found at fault but not ticketed despite the fact that he did not have a valid drivers license.)
But what if...
*Deep breath innnnnnnnnnnnnnnnnnnnnn, Holllllllllllllllllllllllllllld, Exhaaaaaaaaaaaaaaaaaale*
Like I said, my daughter is gorgeous and happy and the center of my world. She may have to get used to wearing glasses in about 6 months or so, but those beautiful blue eyes will still twinkle when she smiles.
skip to main |
skip to sidebar
Life is a journey. We've been through infertility, a micro-preemie in the NICU, a toddler with Cancer and now a young girl with Cerebral Palsy and ADHD. I gotta ask...are we there yet?
March for Babies
Posts
4 comments:
There are also genetic causes for this and that doesn't mean that anyone else in the family has to have it, just that it may have been one tiny slip up in her DNA. That may not be reassuring, but it truly may not have been anything you did or didn't do, but a random chance event. Either way, you are absolutely correct that she "is gorgeous and happy and the center of my world."
ksmaybe
I'm so sorry Blue. You guys ahve been through enough already.
Duane's is no big deal. I know because I have it. And I didn't need glasses until I was in my mid-teens (15? 16?). I have little to no eye-tracking ability and it hurts a bit when doctors ask me to try (the same eye pain you get when you're really tired and trying to focus on tiny print).
Having had this all my life, I know how to correct for it. I turn my head for things most people wouldn't need to -- big deal. I can still drive (I just have a larger blind spot than most and turn my head to look behind more than the average driver). It's never been an issue to me in any way.
I'm pretty confident it will never be an issue for Azure either...just another part of who she is.
It isn't something you'd want your kid to have...but it's certainly not a problem. As the doctor who has been monitoring the lowercase for ROP (finally after 16 months cleared that there is no problem!) said to me, "If you have to have a strabismus, Duane's is the one to have!"
I want to thank you for your blog! I found it JUST when I needed it!
I am starting my own, just to keep my thoughts centered!
Thanks a bunch! Keep up the good work momma Blue!
Post a Comment