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Saturday, April 23, 2011

An update on Gavin's eye pressing

I'm so glad we have had about a year of not much eye pressing (there were phases of a month or so, where it was bad, until we broke it).  His glasses (non-prescription) have really helped.  He would go to eye press, and feel the glasses and put his little fists down.  It was a great deterrent.  Of course, the eye pressing would happen as soon as the glasses came off (for bath time, or bed time).  He had been doing extremely well at leaving his glasses alone, and not taking them off.

At two and a half years of age, things have completely changed. 

About 3 weeks ago, I saw him playing the piano only with one hand.  Where was the other?  UNDER his glasses pressing his right eye.  I knew that was it.  Once he made the connection that he could slide his fingers under his glasses, I knew a new habit had started.

Sure enough, this is now a constant struggle, that occurs 100% of his waking hours.

There are some things that really just frustrate me with Gavin's blindness.  One being, watching my little guy walking with his 'bumpers out' (hands out), and run into a corner of a door or a wall, directly into his face or head.  The other is the eye pressing. 

Oh the eye pressing.

Eye pressing takes the trophy, hands down, as the most difficult.  I don't want to sound frustrated, but we are.  Of course, the objective would be to keep his hands occupied, and busy.  Of course they are, but it takes one split second, or a pause in playing, or one hand, to just slip under the glasses.  I can set him up with a toy, or one of his piano keyboards, turn around to walk to another room.  All it takes is for me to be without hands distance with him.  It's troubling to turn around, and see 3-4 of his little fingers, about one inch deep into his eye socket.  In a split seconds time!

We have tried everything.  The car rides are awful, especially sitting for 45 minutes in the car line to get Landon from school every day.  Toys help, but not with both hands.  The Snuggle Wraps we had used previously, did work.  I couldn't do that to him now.  They are so constricting, and he cannot stand them.  Yes, they serve a purpose, but I think we are past the stage when they worked really well for Gavin.

You can really tell he has been pressing, even with my constant guidance.  It's something you cannot escape.  My house is a mess, I'm behind work, as my time is devoted to keeping Gavin's fingers out of his eye sockets, trying to break him from this habit.  I know he will always have an urge, I get that... but trying to break him the habit right now, is my number one priority.  Sorry this is a frustrating felt blog post, but it is what it is, and comes with the territory of having a child with LCA, with no vision.



My biggest concern with the eye pressing, is the damage it can cause to the bone structure in the face, and of course the damage to the cornea/lens of his eye.  He is more precise now with the pressing, since it is not just his fists, as he did before.  He is actually inserting fingers now into his eye.

I was feeding him soup for lunch today, turned to get another spoonful, and turned to feed him, and the above picture is what I saw.  This is us, all day long.  I feel for all the parents who deal with this.  I'm hoping for a break soon, and hoping we find something that helps Gavin.

* If you are interested in why Gavin may eye-poke/eye-press, please click on the link to the right of the blog that ready "Why does Gavin wear glasses if he is blind?"  I go into pretty fair detail about it.

Thanks for hearing my rant. :)

2 comments:

  1. Keep strong! Make sure to try to get out and breathe and get a few hours to yourself. No working!
    Hugs,
    Meghan

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  2. Oh gosh Jen, just catching up on the blog. We have the incessant eye-rubbing too. It's funny (not) how they go through their 'stages of development' in eye pressing--from general rubbing to some seriously advanced techniques!! Audrey went from rubbing with her whole hand to one finger poking into her eye sockets. It KILLS me!!! It also kills me that when we go ANYWHERE random strangers feel the need so say things like "Aw, she's so tired, she needs to go home and take a nap." I have had various responses to such comments-- from avoidance to outight confrontations, depending on my mood and the time of the month.
    I have even developed this terrible habit of reaching out and grabbing the hands of any children who I see rubbing their eyes!!! Crazy, but it's just a part of me now.
    Deep breaths!!!

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