Everyone has been asking me how Haven's eyes are doing and how they look.....check her out! She is wearing her new robe Great Grandma Ohio sent to her. She has been begging for robes! She actually looks like a little Smurf to me! :)
Her eyes are doing great. She handled surgery and recovery AWESOME! She did want to know EXACTLY what they did to her eyes. I didn't tell her - I told her I'd tell her later when she's older.
You'll notice one pupil is much larger than the other. During the past year Haven's vision in the left eye went from 20/25 to 20/70. We began Atropine drops last November to get her prepared for surgery. After surgery they tested her eyes and her vision has started to improve slightly. THIS IS GREAT NEWS TO US!!! So we are back on the Atropine drops twice a week.
What they do is actually blind the good eye (big pupil) and force her brain to learn to use the bad eye again. The doctor wants us to make sure she is doing lots of workbooks or coloring books as it will help with the vision more than anything else because it makes her have to focus more and work harder at it.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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ROHHAD in Ireland
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
Hi Haven,
ReplyDeleteYou look so awesome in your new robe and your eyes look beautiful!! I hope you are feeling as good as you look!! Mason is at his sleep study tonight and I don't know what to do with myself. I keep finding myself digging into Cameron & Mason's Easter candy!! Your mom keeps telling me to stop it!! I am so glad you are doing so well & you are so brave and strong!! I just can't get over how good you look. Get ready girl cause we are meeting @ Disney in Oct. ( your mommy promised me!!) and Mason is counting on it!!
Love Julie & Mason
ha ha ha...Julie - put the candy down! :) ssshhhh...I've been sneaking gummi bears! :) Haven would yell at me for not sharing!
ReplyDeleteI keep thinking about Mason tonight. Haven and I took 5 minutes out of our evening of playing barbies to only think about Mason. She told me she thinks about him in her sleep - that's where she thinks about everything!
Talk to you tomorrow!
Haven's eyes look beautiful! So happy that the surgery was a success! See you Monday.
ReplyDelete-Emily
In order to keep her eyes straight, Haven may require orthoptics/optometric vision therapy. These therapy procedures may eliminate or reduce any amblyopia (lazy eye) present and encourage binocularity (using both eyes) and stereopsis (depth perception).
ReplyDeleteYou might want to log on to http://www.covd.org for more information.
Dominick M. Maino, OD, MEd, FAAO, FCOVD-A
Professor of Pediatrics/Binocular Vision
Illinois Eye Institute/Illinois College of Optometry
dmaino@ico.edu