Friday, June 26, 2009


Gavin's eye pressing has hit an all-time high. It is a full time job to keep his hands down and occupied. Those of you with a blind baby, or with a child with retinal disease can attest to this. I am noticing his eyes are becoming much more 'sunken' looking.

"Hands down Gavin" or "Hands down monkey" is repeated in this household a couple hundred times a day. (I'm not exaggerating), followed by the little munchkin not listening, us pulling his hands down (he applies his fist with pressure to both eyes) and then the crying begins. The last couple of days, I don't think he has gone 60 seconds (literally) without fists to the eyes. It is CONSTANT.

It's weird, it kind of goes in phases, it's always there, he is ALWAYS pressing on his eyes but some periods of times it seems like it is much more difficult to keep them down. Picture a thumb sucker and having to rip the thumb out of the baby's mouth - it's kind of like that. He gets frustrated, angry and trying to at that moment redirect his attention and keep his hands occupied is difficult, because he begins crying. He is a stubborn little thing, and once he starts crying because you have pissed him off, you typically have a moment or two where trying to refocus him on something else is impossible.

I'm only addressing this issue, because there have been other moms who have found the blog from the LCA/blind babies group who struggle with this.

You are NOT ALONE.

It is the most difficult stage right now, and that brings on a much fussier baby and more exhausting parents! Yes, as with everything this time will pass. I want to make sure I make note about it in a post. I don't want this blog to be one filled with just the aggravating times, but these times are relevant to our lives right now and our struggles.

That being said, his glasses are on order and should be ready next week. This is our third attempt at glasses for him. I'm thinking these will more "baby-friendly" than the others. Although, much more expensive, in the long run, these will hopefully be the best.

Fingers crossed this will help aleviate a little of the eye pressing. I'm sure he will get around it, and continue to do so, but my hope is it will help a little.

I will post pictures of him in his new specks as soon as I can. Those mothers who share in our trials with the eye-pressing, please email me with tricks you have stumbled upon. I have a few up my sleeve, but I have to be smart when to use them, because he grows tired of it quickly :)


  1. Aw my friend, I'm so sorry. I know how difficult this is for you guys. I can hear it in your voice behind that strong smile of yours. The last we spoke I even told Matt how much I feel for you guys. We had a 2 minute conversation and you must have told him 50 times to get his hands down. I know you don't like leaving the boys often but make sure you are getting some time away to refocus your efforts at home!!!
    ~ Megan

  2. Hi Jennifer,

    When Milo was Gavin's age I remember the difficulty with this. To be honest for us it was a very long road. I know it is heartbreaking. There were times I would call my good friend and neighbor just to come relieve me for ten minutes. I was literally on the floor in my kitchen crying in a ball because I felt so helpless and he was screaming. It is these moments where God showed me my strength in my parenting.

    As you know Milo is now two years old and it is still a struggle. He is active enough to where we can stray him away but the phase you are in right now when they aren't walking yet was actually the most difficult.

    With it being summer our pool helped he loved the water and it was a distraction. We also did a lot of the hand/clap songs which I know you said you try to do.

    Stay strong. I truly feel your pain having been there. It is not fun and I hope you let yourself cry and break down when you need to. It is ok to do that!

    I will post a comment to the group if you don't mind with others insight to keep hands occupied.

    Brittany, 4 yrs and Milo(2 yrs, LCA)

  3. Jennifer & Family
    God Bless you during this stressful time. We have been there, twice. Our second, Sydney, was much more manageable than Riley. Riley was headstrong and stubborn, sounds like Gavin.

    We will be at the NAPVI Conference, and can't wait to meet your family in person. Are you staying at the hotel? Message me and we can meet for a meal, possibly in between presenters. My wife cannot wait for the vacation and I can't wait for the dent in my wallet, because from what I hear Disneyland is not too far?

    Keep positive, we know what you are going through and it's true, make sure to get out for a breather. You know we are all here for you guys for support. You will notice his eyes will pop out a little bit once this "intense eye-pressing phase" is over.

    Are his eyes getting dark circles under them? Riley's did, that was difficult to see. Her eyes always looked like they hurt her.

    We will put you down at churce on our prayer request, just to pray for some alleviated stress with the insurance and that the glasses provide relief for him and you both.

    Always, your extended LCA Family -
    David, Deena, Syd and Ri Ri


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