Monday, May 2, 2016

EUA, This Time With Refraction

It’s that time of month again—there’s a trip to Detroit, a visit to my daughter’s retina surgeon and possibly, but not necessarily some sedation in an operating room.   Today was the day and due to some drawing of straws, flipping of coins and me saying things like, “you are just so GOOD at taking her” to my husband, I stayed home and he left yesterday with my daughter on a flight north.

There were travel problems yesterday and there have been more travel problems today.   I won’t digress but I can say I’m not sure any amount of cajoling and complementing my husband will make him want to be the lead parent next time.    But on to the good stuff—the results are in.

I say that like we’re going to suddenly go from dismal sight to fully restored vision, which just ain’t gonna happen.   But there is good news and information and…get this…a picture too.   Only the picture is still in transit with my husband so I’ll save that for tomorrow.

The thing that’s the best news is the right eye’s retina is attached.   It’s smooth and lays down just like a retina should, thus giving the eye the best chance for non-distorted vision.    The right ocular pressure is a bit lower than last month, but within reasonable range.

You may remember my daughter’s natural lens being removed in December and during that same procedure, artificial substances were added to her eye to try and return structure and help the retina reconnect with the choroid layer behind it.   Typically, without a natural lens, you would have one doosie of a prescription, say +10 to +20, but the Silicone Oil and PFO that was added to her eye is now acting as a sort of internal lens in the back of her eye.    Dr. Trese measured her prescription at  a +4.5 today.   He said since the PFO moves around, she may have better corrected vision laying down or perhaps standing, depending on how the fluids move.

The left eye is holding its own, it’s returned by itself to normal pressure.    It hasn’t improved much from a retinal detachment standpoint with most of the folds still remaining from the initial trauma.   Dr. Trese thought thought he did see some slight improvement.

On to some other things Dr. Trese observed: he was concerned with the aberrant vessel growth in her eyes and how the retinal vessels didn’t grow to the full edge of her retinas.   My husband told him about the early on observation of Persistent Fetal Vasculation by Dr. Grace a full six months before the main event when the vision loss occurred.    During the last months of last year Dr. Grace and her team had observed significant aberrant vessel growth in both her eyes.    They had treated it with Avastin via injection which helped reduce the unwanted vessels significantly.    Dr. Trese said this made sense based on what he was seeing but he would still like to pursue understanding why the aberrant vessel growth occurred in the first place.

He drew some blood and is having some genetic tests run.   We had talked about genetic testing before, but without knowing what specific tests to run, it’s just a lot of genes and not necessarily any connection to what you may or may not have or might end up getting.

Dr. Trese said there are some mutations that are associated with retinal dysplasia, but there is no absolute known mutation for persistent fetal vasculation.  He’s interested in mutations associated with retinal vascular changes and it’s always good to be able to rule out if possible.   He is running a test for Nori’s disease but he doesn’t think it’s a likely candidate as much of her situation doesn’t match.   He also mentioned the Frizzled 4 gene, which I wrote down, thinking I misunderstood him, but it’s a real thing.  

Then there was the refraction—which I have been impatiently waiting for for months.   Now that I had the measurements, I could order lenses for her glasses and sunglasses for her.   I was on a bike ride today (I finally got around to training some) but I was stopping and taking calls to make sure I could get her lenses as quickly as possible.    My thanks go to Erin at My Eye Dr. who is going to try to get them in for us tomorrow.

So what, if anything, will my daughter see better tomorrow with her new lenses?  Don’t get too excited yet.    It will hopefully pull things into better focus on her right eye, but how well is that eye functioning after months of retinal detachment as well as other insults the eye has been through?  Did it heal/repair or is it permanently damaged and we’re getting some information but not a perfect picture.    Second, is her brain paying attention to the right eye or is it favoring the left eye and ignoring the input from the right?   We don’t know this either but we should know more soon.  That part should be correctable with patching the dominant eye for a while—something you see commonly with young children.

My fondest wish would be for my daughter to recognize me without having to remember what I’m wearing, where I’m standing or by hearing my voice.    Actually, I’d just be happy if she’s say from across the room, “mom, is that an elephant on the television?”

The Big Boy Update:  Remember those few parenting wording changes I told you about from our meeting with Dhruti?  They’re making a difference.   It’s not much and it seems subtle to an adult, but children are literal creatures.   My son was great all day today.  

The Tiny Girl Chronicles:   My husband and daughter had a very long day today, getting in late last night, arriving at the hospital at 6AM and then traveling all day to come home.    He told me my daughter was such a happy and non-complaining child all day.    She played with her toys, walked through the airport without complaining and put up with all the waiting and sitting that travel typically entails without a complaint.

Fitness Update:  I biked thirty-six miles today.   It was not without incident, but I will save that story for another day.

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