Skip to main content

First day with glasses......

As you know by now, if you've been keeping up with the blog, is that we have been waiting for Ethan's glasses to arrive in the mail. Well, today they came! The glasses won't be able to correct all of Ethan's vision issues, but we are hoping that they will help.

When it comes to PBDs, nothing is predictable. Every child is unique and things can change often and/or quickly. In general most children with PBDs have numerous vision issues (depth perception problems, limited peripheral vision, cortical vision impairment, cataracts, glaucoma, complete blindness, etc.) and unfortunately most are unable to communicate verbally what they are experiencing.

So, when it comes to Ethan's vision this is what we know - he is farsighted and has astigmatism. It also appears that his optic nerve is smaller than it should be. As mentioned in previous posts, the eye specialist in Iowa estimated his vision at 20/750, and Ethan will be undergoing some additional testing in August that will give the doctors an idea of how his brain responds to visual stimulus. We do know that Ethan uses what vision he has very well. He loves to play with toys, reaches for objects, excites when his bottle comes near his mouth, etc. His vision therapist is very proud of him. So, it is our hope and prayer that the with the correction of the farsightedness and astigmatism, that Ethan's eyes will have a greater ability to work with the brain to process what he sees. It is also a hope that the glasses will prevent his eyes from crossing or drifting apart.

Keeping the glasses on in addition to the hearing aids is already proving to be a challenge, but I'm sure with time Ethan will come to accept them as just another part of him. I am so thankful that he is only wearing the helmet at night now (although he hasn't worn it since Wednesday because of him running a temperature).

So, here comes the fun part, pictures of the little man in his glasses!

















Comments

  1. What a stud. He's lookin' good with the baseball pants. Keep it up Mom and Dad!

    Brien

    ReplyDelete

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...

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. 

Big Day - Field Trip to Bass Pro & Easter Seals Family Night at the Playhouse Children's Museum!

Ethan was so tired tonight. He had a busy day at school, which also included a field trip to Bass Pro to meet Santa and to go bowling, and then this evening we had our first visit to the Playhouse Children's Museum. More importantly though, here's a quick medical update: We are thankful to report that for the last two days no one has seen any seizures, so we are hoping and praying that this most recent increase in his medications might be making a difference. Our current neurologist (the one who is 2 hours away) called in a stronger dose for the diazepam. Ethan had been prescribed a 2.5 mg dose by the neurologist who saw him when he was hospitalized last month, but since it has not stopped the seizures the last 2 times it was administered, our neurologist calculated that a 7.5 mg dose is more appropriate for his weight.  So our hope is that the new dose will stop the cluster seizures, if they occur again. Obviously, the goal is to not have a need to use the...