Wednesday, September 8, 2010

Labor Day weekend

For the Labor day weekend we traveled to Austin to visit Grandma and Grandpa Benedict, Thomas's family and my brother and his family. We enjoyed our time visiting with everyone as well as our time away from Houston.

My dad, my brother with my niece Ashley, my mom and us with the girls

Grandma Benedict with her granddaughters. The girls were getting their break from their helmets.

We are thinking and praying for Grandma Benedict. She had total knee replacement surgery and hope for a speedy recovery.

Our little Haley had an eye doctor appointment today. Her doctor (Dr. Carvounis) has been following her since he did her first eye surgery. He saw no changes to her right eye. Her right eye still has scarring from the surgeries and the doctor states that it doesn't look like its going to get any better. At best guess she only can see light. She will continue to wear the glasses since we don't know what she can see. Since she got her helmet we have not been able to get her glasses on. I tried using an elastic cord to hold the glasses tightly around the outside of her helmet, but that didn't work for long. The glasses eventually slipped down. Haley has also started doing eye presses. For those that don't know what this is, it's when a blind person presses on their eyes for some feedback or stimulation. This action over time is not good because it can push the eye too far back in the socket or cause more damage to an already frail eye. So now we are always watching Haley to see if she puts her hands up to her eyes. We have been moving her hand down over and over. This is going to be a long process to get her to not do this anymore. Anyone with this experience have any ideas or have done something to successfully stop the eye presses?

Not to leave out our sweet Rachel. Rachel is sick with a cold right now, but she will get better. It's hard to see her or Haley sick. Other than that she is doing good. We have not gotten glasses for her yet. We want to get them on her soon, but are hoping to figure out the whole glasses with the helmet dilemma soon.


  1. Hmm, I have no idea how you could do glasses with the helmet. I am sure there is some way to do it! Good luck!

    Sorry to hear that Haley's eyes are that bad. The eye presses are not a good sign, but I am sure that she will excel in other areas despite her blindness!

  2. Thanks for sharing the beautiful pictures.It is good to know that you were able to take a break from Houston for labor day. I will keep you mother in my thoughts and prayers and I'm sure she will soon recover. Maybe you should wait until the girls are done with their helmets before getting back to the glasses. I will continue to keep all of you in my prayers. Love, Claudia

  3. I wonder if there is a way to use stick on velcro on the glasses strap and helmet to help them stay in place. I have no experience with eye presses, but my daughter has sensory issues such that she always has to be chewing on something or otherwise seeking stimulation. She's chewed her fingers raw before. The only way I can get her to stop doing something like that is to give her another way to get the stimulation that she craves (through a paci, a sensory ball, etc.). I don't know if that is any help since Haley is specifically looking for stimulation in her eyes, but maybe it can help you figure something out. Good luck! I hope Rachel feels better soon!

  4. They make contacts lenses for babies... my cousin who was a preemie has only ever had the contacts and no glasses... he'll be 18 in Nov. It does take a bit of practice to put in and remove them on infants, but they stay in and don't interfere with helmets or hearing aids (my cousin is legally blind and 50% deaf.. he can see 18" in front of his face and does everything a sighted person can do if that helps you any).

  5. Hi Amanda

    Have a look at:

    Hope it helps!

  6. This isn't the same situation, but we have had trouble with our daughter keeping her glasses on while her eye is patched. It was suggested that we use water wings to splint her elbows for a short time when she takes her glasses off. We did this for a couple of days, and we rarely have an issue with the glasses. The girls are precious, and I know you are enjoying them.



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