Jump to content
[[Template core/front/custom/_customHeader is throwing an error. This theme may be out of date. Run the support tool in the AdminCP to restore the default theme.]]

Ryan (update)


cliaz
 Share

Recommended Posts

So we took Ryan to the follow up appointment at the Pediatric Ophthalmologist. Since he is 1 year old now it was easier for the Dr. to check his eyes out more and it turns out he also has a genetic disorder called Foveal Hypoplasia. Pretty much (if I understand it right) he has underdeveloped retinas. The Dr. described it as if we see the world through a 5.0 mega pixel camera, Ryan sees it through a 1.5 mega pixel. Everything is graining to him but his vision in itself isn’t that bad. He can see us and recognize who we are from across rooms and outside down the street. He sees objects and can grab them with no problem at all and passed all of his vision test.

 

But with this and the Nystagmus the Dr. believes that he might have Ocular Albinism. His eyes are a pale blue instead of the pink that Albinos have so he said it might just be partial. We wont know until we go meet with this Dr. in DC who is pretty much like the Dr. from that Fox show house. He will take all of his issues and try to figure out what is wrong.

 

You would think a person would be some what upset about this new additional news we’ve gotten but in fact I feel good. He is being diagnosed very early on so we can start working with him now instead of waiting until he goes into school to find out he has a problem.

 

I feel bad that he probably won’t be able to play sports and enjoy a team activity like that but at the same time if this is the worse thing that is every going to happen to one of my children health then I’m filled with over joy.

 

 

So Chargerz do you have any insight into this at all?

 

 

EDIT: Here is what I found on it: http://www.aniridia.org/conditions/Fovea.html

Edited by cliaz
Link to comment
Share on other sites

So we took Ryan to the follow up appointment at the Pediatric Ophthalmologist. Since he is 1 year old now it was easier for the Dr. to check his eyes out more and it turns out he also has a genetic disorder called Foveal Hypoplasia. Pretty much (if I understand it right) he has underdeveloped retinas. The Dr. described it as if we see the world through a 5.0 mega pixel camera, Ryan sees it through a 1.5 mega pixel. Everything is graining to him but his vision in itself isn’t that bad. He can see us and recognize who we are from across rooms and outside down the street. He sees objects and can grab them with no problem at all and passed all of his vision test.

 

But with this and the Nystagmus the Dr. believes that he might have Ocular Albinism. His eyes are a pale blue instead of the pink that Albinos have so he said it might just be partial. We wont know until we go meet with this Dr. in DC who is pretty much like the Dr. from that Fox show house. He will take all of his issues and try to figure out what is wrong.

 

You would think a person would be some what upset about this new additional news we’ve gotten but in fact I feel good. He is being diagnosed very early on so we can start working with him now instead of waiting until he goes into school to find out he has a problem.

I feel bad that he probably won’t be able to play sports and enjoy a team activity like that but at the same time if this is the worse thing that is every going to happen to one of my children health then I’m filled with over joy.So Chargerz do you have any insight into this at all?

EDIT: Here is what I found on it: http://www.aniridia.org/conditions/Fovea.html

 

 

I have to say that I can't add anything to help you out here but I do want to say that I admire your positive outlook on his situation and think that will only serve him best as he gets older and realizes how supportive you are and that he may be differeent but still special and important to others, which will mean the world to him. Best of luck taking care of him and I hope all works out for the best. :D

Edited by irish
Link to comment
Share on other sites

So we took Ryan to the follow up appointment at the Pediatric Ophthalmologist. Since he is 1 year old now it was easier for the Dr. to check his eyes out more and it turns out he also has a genetic disorder called Foveal Hypoplasia. Pretty much (if I understand it right) he has underdeveloped retinas. The Dr. described it as if we see the world through a 5.0 mega pixel camera, Ryan sees it through a 1.5 mega pixel. Everything is graining to him but his vision in itself isn’t that bad. He can see us and recognize who we are from across rooms and outside down the street. He sees objects and can grab them with no problem at all and passed all of his vision test.

 

But with this and the Nystagmus the Dr. believes that he might have Ocular Albinism. His eyes are a pale blue instead of the pink that Albinos have so he said it might just be partial. We wont know until we go meet with this Dr. in DC who is pretty much like the Dr. from that Fox show house. He will take all of his issues and try to figure out what is wrong.

 

You would think a person would be some what upset about this new additional news we’ve gotten but in fact I feel good. He is being diagnosed very early on so we can start working with him now instead of waiting until he goes into school to find out he has a problem.

 

I feel bad that he probably won’t be able to play sports and enjoy a team activity like that but at the same time if this is the worse thing that is every going to happen to one of my children health then I’m filled with over joy.

So Chargerz do you have any insight into this at all?

EDIT: Here is what I found on it: http://www.aniridia.org/conditions/Fovea.html

 

 

 

Thats a great outlook Cliaz..Best of luck with him and stay positive its important.

Link to comment
Share on other sites

Your doing the right thing Cliaz-stay positive, as the little man will feed off of this influence. Always let him know the world is his oyster and he can do anything he sets his mind to do and most importantly, he has a Dad that loves him dearly and that's got his back on anything he chooses to do(that's beneficial to him)-Peace PD.

 

God Speed Ryan!!!!!

Link to comment
Share on other sites

Hey thanks all. I'm happy though to know that his issues aren't a symptom of something meaner hiding in his gentic makeup.

 

I'm sure you all remember how worked up I was when we first found out about his nystagmus.

Link to comment
Share on other sites

This eye stuff is WAY outta my league, and I can't get an opinion on this soon because it's a weekend. I'll try to get info for you on Monday!!

 

In the meantime, hang in there!! It does sound like you have a great perspective and attitude regarding all of this, and that's HUGH!!

 

As always, I will be thinking about and praying for the best outcome for your son. :D

Link to comment
Share on other sites

This eye stuff is WAY outta my league, and I can't get an opinion on this soon because it's a weekend. I'll try to get info for you on Monday!!

 

In the meantime, hang in there!! It does sound like you have a great perspective and attitude regarding all of this, and that's HUGH!!

 

As always, I will be thinking about and praying for the best outcome for your son. :D

 

 

 

thank you sir

Link to comment
Share on other sites

I have a nephew named Ryan so it will be easy for me to remember him in my prayers. If he ends up with half the humor and positive attitude of his daddy, he'll be a great kid! Stay positive as it rubs off!

Link to comment
Share on other sites

I talked to an ophthalmology colleague today, and he just repeated what you already know. He doesn't think that a diagnosis of Ocular Albinism carries a worse prognosis for your son.

 

It looks like you're getting good follow-up from the doctors that you're seeing. :D

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

  • Recently Browsing   0 members

    • No registered users viewing this page.
×
×
  • Create New...

Important Information