This is a nugget of information I took from Ropard.org. It was written by Camille (via her mama), a now-6 year old overcoming severe ROP and Glaucoma. I have just speaking with her mom, Jen and am excited at what an amazing resource she has become already, and shes nice to boot. I have modified it to apply to Dawson since he is quite a bit younger than she is. But the similarites are AMAZING.
What can I see and how is my vision different from everyone else’s?
This is the question that drives my parents nuts (well this among many =), and they won’t know for sure what I can see until I can tell them! Cover a cardboard toilet paper tube with Saran Wrap and smear that with Vaseline and look through it while covering your left eye. Thats the best way we can describe it.
They can make some pretty good guesses, though:
I can see enough, I know when someone/something is in front of me. I know that my Momma and Daddy look like.
Because I bring objects up close to my face, my best detail vision is probably up close. Please don’t discourage this, even if it is the (in the future) TV. It is how I adapt.
I may tilt my head differently to look at things, and this is okay. It is how I make up for patches or blind spots in my vision.
My vision may fluctuate throughout the day, and may get worse with fatigue.
It takes longer for me to adapt to changes in lighting than most people, and I may sometimes be more sensitive to bright lights.
When I am looking at you, it looks like I am looking off to the side, or sometimes my vision will wander. I am adapting to make the most of my vision.
I seem to be able to see large objects at somewhat of a distance and smaller objects within about three to six feet. It’s hard to tell if I see things, or if I just have a good memory about where things are.
I love to look at pictures in books, but it is best if they are bright and simple; visual clutter is often hard for my eyes to sort out.
I can see your facial expressions if I am within about 1-2 feet of your face.
Will I ever be able to get more of my vision back?
{Camille} We don’t know. My doctor’s team in Detroit {Ha! That is Beaumont! We are so lucky to have them so close to us. Miss Camille has to travel over 15 hours to see the same Retinal team we do} is working hard on research to grow new retinas and also on research to implant chips into the retina to allow vision.
Even if these things don’t work out, I can live a fulfilling and successful life. There are many things to help me be independent, and I have a ton of potential. My family, my friends, and you can help me to realize that.
{Adding for Dawson} While I can still see objects, I explore most things by touch taste and sound. Thats okay. Let me do it. But, I may be overwhelmed when I am exposed to a lot of sound, speech or new things all at once. It does not mean I am a fussy baby, it means I am over-stimulated. Give me a few minutes to nap or regroup and I can be as good as new.
I get scared easy. I cannot see things coming or know where everyone/everything is. It is easy for things to sneak up on me. Please talk me through any changes or new things as I grow.
Most of all, be patient with me, and with my mama. =)
{Sara} Sometimes I dont always like to talk about what is going on with Dawson. It is how I am coping for now. He is such a special little boy and is growing so fast, that sometimes we pretend everything is just as fine as I say it is. Because to us, it is. We do not know any different other than the hand we have been dealt and we are soo soo lucky to have the medical team that we do have, right here in our home state. Sometimes I get sad about some of the obstacles I know Dawson has ahead of him. (Will he drive, will he date, marry, work? etc etc) but for the most part, we are all trying to understand.
Because of these simialarities, I have gotten a lot of information in a very short period of time that will help me understand what to expect as Dawson grows. I am so very thankful for that, even though I know it may change or just be different.
Friday, June 25, 2010
Tuesday, June 22, 2010
The one where I use Paint Diagrams
Please trust me when I say this is not a post requesting pity, this is a post requesting understanding and providing you with lots of information.
Dawson is doing well, continuing to learn and grow, develop and understand. He weighs in at about 17ish lbs and is 28inches long. He wears 12m clothes and size 3 diapers. He is still on step 2 baby foods, as he is not crazy about the texture of "people food" yet. He army crawls, has excellent hand skills (turns toys over, and over, and over) sits unassisted, stands, does downward dog (you think I'm kidding?) dances, and laughs and smilles. He is starting to talk and babble, although he doesn't say any actual words yet. He is doing great! He still gets PT once a week at Sparrow, and now gets both visual and physical therepy services through early on. He had tubes placed in his ears a few weeks ago and seems to be doing well. We had a check up with the ENT yesterday and the tubes are healing nicely, but Mr D. STILL cannot pass a hearing test. It is basically this test where they sit him in a room and talk through some speakers/ make noises through speakers. They want him to look in the direction the noise is coming from. He won't. Not even a little. He will make sounds back but the head is still. Which = fail. So we are headed to Sparrow in the next few weeks to be sedated so they can measure the brain waves in reaction to noise. However, we may be able to explain why...
We recently found out Dawson is "visually impaired".
At least thats what his Dr. Called him last week. I'm having some difficulty swallowing the reality. Visually impaired. Impaired.
But, he is not blind. Let me explain.
This my friends, is a very pooly drawn human eye.
That is what healthy, normal eyes look like.
This is what Dawson's right eye...DID look like.
Basically, what we thought was a membrane growing in the cornea ( I don't know if I have wrote about this before, I haven't really wanted to talk about it much.) They found that in the healing process, both his lens and iris had begun migrating into the cornea, which they call "shallowness" or "shallowing of the cornea".
Now, it looks like this.
(The dark red is blood, that will eventually dissolve) They went in and removed his lens along with some eye jelly (that resides in between the lens and the retina) and had hopes of being able to place a contact lens on the eye in the future. The contact lens would then hopefully be able to pick up the tasks that the lens would usually perform. You cannot tell that it is missing, he just is VERY sensitive to light, and without the lens, cannot see other than lights and colors. Also, this eye tends to migrate inward because it is not performing any basic function for now. This was done in early May. They had hope of us returning in 4 weeks to a healing right eye and a perfectly healthy left eye (as it had been all along)
Well now, the left eye looks like this...
The iris and lens have started moving and the cornea is becoming shallow. Oh goody. The retinal specialist had hopes of there being some divine intervention with the opthamologist to avoid surgery but today (over the phone) the optho. is hesitant. He feels that waiting could pose a threat to the cornea and since we already know the eye is capable on losing all of its depth, its to risky. I am really struggling coming to terms with this, because it would pretty much mean no chance at any un-assisted normal vision. I am still hanging on to the hope that one day there will be some magical surgery that he can have that will cure his poor eyeballs, and viola! No glasses. Intead, he is probably going to end up with a very thick set of specs. Repeat.after.me.Oh Joy.
We go see the optho tomorrow to get the official word, and game plan. In the meantime, I hope to see you all out here more frequently. Blogging is an outlet for me, one that I need. But sometimes, I hate talking about the bad stuff. But the good stuff seems so fake, unrealistic for me. Like we are waiting for that shoe. I hate it.
I am hoping to move this blog a little though, if you do not mind. I need to take this in 2 ways. I am going to A- Make it more about me. The mama. I myself am facing my own personal journey. One that I would like to document. I will be shy, embarrased, laying it alllll out there. I hope I do not lose readers because of it, but I need it for me in the present, and I want it for me in the future.
B- I am going to be using this as awareness. ROP Awareness. And I am starting by leaving you, with this. ROPARD.org.
Dawson is doing well, continuing to learn and grow, develop and understand. He weighs in at about 17ish lbs and is 28inches long. He wears 12m clothes and size 3 diapers. He is still on step 2 baby foods, as he is not crazy about the texture of "people food" yet. He army crawls, has excellent hand skills (turns toys over, and over, and over) sits unassisted, stands, does downward dog (you think I'm kidding?) dances, and laughs and smilles. He is starting to talk and babble, although he doesn't say any actual words yet. He is doing great! He still gets PT once a week at Sparrow, and now gets both visual and physical therepy services through early on. He had tubes placed in his ears a few weeks ago and seems to be doing well. We had a check up with the ENT yesterday and the tubes are healing nicely, but Mr D. STILL cannot pass a hearing test. It is basically this test where they sit him in a room and talk through some speakers/ make noises through speakers. They want him to look in the direction the noise is coming from. He won't. Not even a little. He will make sounds back but the head is still. Which = fail. So we are headed to Sparrow in the next few weeks to be sedated so they can measure the brain waves in reaction to noise. However, we may be able to explain why...
We recently found out Dawson is "visually impaired".
At least thats what his Dr. Called him last week. I'm having some difficulty swallowing the reality. Visually impaired. Impaired.
But, he is not blind. Let me explain.
This my friends, is a very pooly drawn human eye.
That is what healthy, normal eyes look like.
This is what Dawson's right eye...DID look like.
Basically, what we thought was a membrane growing in the cornea ( I don't know if I have wrote about this before, I haven't really wanted to talk about it much.) They found that in the healing process, both his lens and iris had begun migrating into the cornea, which they call "shallowness" or "shallowing of the cornea".
Now, it looks like this.
(The dark red is blood, that will eventually dissolve) They went in and removed his lens along with some eye jelly (that resides in between the lens and the retina) and had hopes of being able to place a contact lens on the eye in the future. The contact lens would then hopefully be able to pick up the tasks that the lens would usually perform. You cannot tell that it is missing, he just is VERY sensitive to light, and without the lens, cannot see other than lights and colors. Also, this eye tends to migrate inward because it is not performing any basic function for now. This was done in early May. They had hope of us returning in 4 weeks to a healing right eye and a perfectly healthy left eye (as it had been all along)
Well now, the left eye looks like this...
The iris and lens have started moving and the cornea is becoming shallow. Oh goody. The retinal specialist had hopes of there being some divine intervention with the opthamologist to avoid surgery but today (over the phone) the optho. is hesitant. He feels that waiting could pose a threat to the cornea and since we already know the eye is capable on losing all of its depth, its to risky. I am really struggling coming to terms with this, because it would pretty much mean no chance at any un-assisted normal vision. I am still hanging on to the hope that one day there will be some magical surgery that he can have that will cure his poor eyeballs, and viola! No glasses. Intead, he is probably going to end up with a very thick set of specs. Repeat.after.me.Oh Joy.
We go see the optho tomorrow to get the official word, and game plan. In the meantime, I hope to see you all out here more frequently. Blogging is an outlet for me, one that I need. But sometimes, I hate talking about the bad stuff. But the good stuff seems so fake, unrealistic for me. Like we are waiting for that shoe. I hate it.
I am hoping to move this blog a little though, if you do not mind. I need to take this in 2 ways. I am going to A- Make it more about me. The mama. I myself am facing my own personal journey. One that I would like to document. I will be shy, embarrased, laying it alllll out there. I hope I do not lose readers because of it, but I need it for me in the present, and I want it for me in the future.
B- I am going to be using this as awareness. ROP Awareness. And I am starting by leaving you, with this. ROPARD.org.
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