Skip to main content

Eye Doctor Visit - May 21, 2012

Ethan went to a new eye doctor today. 

Last year we made the long trip to Iowa to see a retina specialist and then he referred us back to St. Louis Children's for a doctor there and for glasses. Ethan wore his glasses for just a short while before he completely refused to keep them on. Every time we'd put them on he'd pull them and his hearing aids off. So, eventually we just decided not to fight it because we knew he could see some, and without his hearing aids he can't hear that much at all. So we picked our battle.

We wanted to try to find an eye doctor that wasn't as far as St. Louis, and we had already had a visit when Ethan was just a few months old with one of the doctors in our area - which we didn't like, so we weren't sure what to do. But, a few months ago a friend, who has a little boy just two months younger than Ethan who has cerebral palsy, told us about the doctor she took her son to in Champaign, so I called and made an appointment. 

Today, Ethan say the doctor. He seems really nice and said he'd heard of PBD before, which was pretty impressive to me. Ethan did not enjoy the exam and was really agitated for most of it, but we did find out a few things. Since last year Ethan's farsightedness has gotten worse; his right eye is much stronger than the left which is starting to cross and not be used as much; he has the beginnings of some very small cataracts and there is some slight pigmintation on his retinas now. For the farsightedness he wrote a stronger prescription for glasses --- if only we can find a way for Ethan to wear them and not rip them and his hearing aids out..... to strengthen his left eye the doctor has instructed us to put dialating eye drops in Ethan's right eye to force him to use the left eye. I have no idea how in the world I am supposed to do this since it took two people (myself and my father in law) to hold Ethan down while a nurse put drops in his eyes today at the doctor's office! After talking to a good friend I have even more questions and concerns about this plan of action. The doctor will monitor the cataracts, he said that they are very small and aren't bothering Ethan's vision at this time and he couldn't say if they would need to be removed when Ethan was 3 years old or 30 years old - we'd just have to wait and see. There isn't anything that can be done about the retinas either and at this point they too will simply be monitored for change over time.

So, tomorrow we'll begin the process of trying to get someone to put the stronger prescription in the Miraflex glasses frame we already have and also look and see if perhaps Ethan would tolerate a different type of frame better. LOL 

I'm afraid what we may have to do is take turns wearing glasses part of the day and wearing hearing aids the other part of the day. I really don't like this idea, but if we can't get him to wear both at the same time, I'm not sure what else to do. I'll keep everyone posted about this battle.... 

Prayers are greatly appreciated!!


Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.