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!!

Labels:

Comments

Post a Comment

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...
Post a Comment
Read more

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. 
1 comment
Read more

Asking for prayer

Asking for prayer from all my prayer warriors out there. Yesterday we went up to Carle for blood work. Ethan has been on the higher dose of Cystadane (betaine) for a month now so we wanted to check to see if it has made any positive impact to his VLCFA levels and there were a few other things that needed to be checked including his Vitamin D level and his ACTH levels (we check ACTH every 5 to 6 months because most children with PBD develop adrenal problems at some point in time). This morning while Ethan was at school I got a call from our geneticist and his nurse. I left Ethan at school for the first time today and he did great, but that is for another post. They called to let me know that two of the labs had come back so far and the rest were still pending and would take a while, some like the VLCFA will take several weeks. Well, the test showed that Ethan has low levels of Vitamin D. He already takes a multivitamin and gets additional Vitamin D from his Bright Beginnings Pediatr...
1 comment
Read more