Lets Rocket!!

I have mentioned before that the Kiddo has been in desperate need of new glasses. He’s had his ‘old’ glasses for at least two years, (if not longer) because his lens prescription hasn’t changed. As most of you know he has glasses more for eye protection then for help with seeing, this being the case he gets the the good stuff and fancy transition lenses. This means buying new glasses doesn’t happen unless it’s really really needed. But, as you can see (hopefully) from this picture, his frames are a little small, the ear and nose pieces leave dents when they are removed. He has begun to play with them (lifting them off his face), and I’ve had to start constantly nagging him to leave them alone.

Of course nagging the child has gotten old quick. The Man and I discussed it and decided to go ahead and buy him some new frames. We went through coastal contacts online because they have a great return policy and a really great price for frames AND lenses. Plus they have Astro Boy themed frames, the Kiddo was in love the minute he saw them…

Gunmetal gray on the outside, minty green on the inside, with Astro Boy flying through outer space. The measurements were right (we took him to quite a few stores and tried on several dozen glasses to make sure we knew what size would fit him).

They came in a little over a week, far quicker then I thought they would. The lenses are his current prescription and polycarbonate, but we skipped getting him transition. The way we figure it these glasses will get him through the next few months until his eye doctor appointment in July. Then once we know for sure if his eyes have changed or not we can go get new lenses put in. The cost of the frames plus lenses was less then his old frames alone; for 38 bucks the Kiddo is happy, and is finally leaving his glasses alone… Which makes ME happy because now he’ll actually keep his glass ON and that means protected eyes.

Lookin good Kid.

A carrot a day...

Today we finally got to take the Kiddo in to see our "second opinion" eye doctor. I am not sure how many of you remember the last eye doc visit, and how frustrated I was with it all. I'll do a really brief back story for anybody who missed it (with links to older posts included if you're bored and confused enough to go read back story *chuckle*)...

The Kiddo has optic nerve hypoplasia (ONH link in side bar) which basically means that when he was born the optic nerve (which is what you use to see) was severely underdeveloped in his left eye. He sees very well with his right eye but with his left he can really only see with the peripheral, the central vision is non existent. About three months ago we took him to an opthomologist who told us we should patch his good eye so that he works his bad eye harder and hopefully improves his vision. After about a month of that we went back and were told it was helping and to keep patching. The whole thing didn't really jive with what I know of the ONH so when we found out there was a pediatric opthomologist who is the leading expert on the condition in Utah, we set up an appointment with him. Till then we continued (for the most part) to follow the other opthomologists orders to patch the Kiddo.

Today was the day when we finally got to go to the new doctor. It was a two hour visit as they did all the usual vision tests, including dilating his eyes. He was amazing with it all (as is usual for him).. when the assistant was doing the preliminary vision check he stole her heart. She put up pictures on the far wall (vs letters like they do for adults) and asked him what he saw. He paid close attention and named them all quickly with his right eye. When she covered the right and had him use his left he tried his best to name them but after four or five pictures he got frustrated, rather then throwing a tantrum or getting mad when she asked him what the next picture was of he very sweetly said "you tell me." I admit it, I laughed out loud.

When she asked us who our normal eye doctor was and we told her she acted shocked and said as far as she knew that doctor wasn't a pediatric doctor!! She told us to make sure we double checked with the doc when he came in to see the Kiddo though just in case she was mistaken.

She was not mistaken, the doc told us that he knew the people at that office and that no they were not pediatric eye doctors. I was so mad, I had asked on two separate occasions to make sure that they were and was told both times yes. My mom makes a very good point that they probably had general training in the pediatric vision area before they went to their field so probably in their heads they ARE trained for peds (not that she isn't equally annoyed that they weren't self aware enough to know that our Kiddo needed somebody with more specialized knowledge then they had).

At any rate the end result is that we don't have to patch his eye anymore. Really we never did. The plus to having done it is that we know we reminded his brain to use what little vision that eye gives to help him see. And ultimately there is no negative consequence to having done it aside from the temporary discomfort (which the Kiddo wont remember).

I'm so glad we decided to follow our guts and get a second opinion. It's a good feeling to know that sometimes instinct is a good thing to listen too and when you feel like something isn't quite right then go ahead and check it out.

Eye don't think so

The first doctors appointment of the day is done. It was amazingly quick and, sadly, did not quite have the end result we were hoping for. The eye patching continues..

I suppose that means things actually went well, and that the eye patching has helped. The doc decided that since the Kiddo has figured out how to function with the good eye patched, and how to "see" things with just the bad eye, that it's working soooo we have to keep doing it. That's the bad/good news. The good news within that is we only have to patch him half the time. Monday through Friday and half days (from lunch to bedtime). In two months (June 19th) we go back to the doc and see where we stand.

My first thought is that his vision is not really improving he's just smart enough to figure out how to live with limited vision. But then I remind myself that is the point... remember we aren't really trying to improve the vision in that eye, what we're doing is forcing the brain to USE that eye. And THAT is something it's doing so I'm not too annoyed that we have to keep doing it.

My ending thought is that by doing part time I have a LOT more flexability with what I do and when. I can patch him early so we can go play on the jungle gym later, or I can move around his two patch free days. I think this will be a lot less stressful for all of us.

Now if I could just figure out how to get the stupid patch off his eye without leaving him all red and bruised... (sugestions/ideas?????)

Monday updates

First I have to get this off my chest...

SNOW!! For the love of all that's holy can't summer just come already yet grrr

Okay now for the updates. The Kiddo is doing amazing. I know kids adapt, but he's adjusted so quickly to having to wear an eye patch. Yesterday I went to put it on his face and he quetly asked me not too. He asked if I would please put it on his left eye instead of his right. It made me so sad, but I explained that it had to go on his right eye in order to make his left eye stronger. He grumbled but let me put it on him. This morning we put patches on both his Little Einstein boys so they could be like him. He didn't even try to talk me out of it, he just closed his eyes and said "go ahead". We really haven't had any fits or any attempts at removal since the first day we used it.
Lady D mentioned that I should try to explain what I've learned about why we are putting on the patch (from my dad, and my research) a little more here as an update. I think she might be right so here goes...

My dad explained that the Kiddo's brain has probably not been "listening" to his left eye. Since his right eye is so much stronger the brain has been using that as it's primary source of information and slowly ignoring the left eye more and more. The patch forces the Kiddos brain to start listening to the Left. Sure the images it gets from the left are minimal at best but as long as the brain is trying to listen to it the vision in that eye will improve. The optic nerve itself will not grow any larger so THAT part of his condition wont change. However as long as we make sure the brain is using the eye then the other parts of his eye are going to continue to develop until he's nine (just like his other eye will)... It will take awhile for his brain to stop trying to use the right eye and start using the left (which is why we have to do a full four weeks with the patch before we can check to see if there's an vision improvement).

I added a link to my side bar for a really good Optic Nerve Hypoplasia site. It's a membership site for families of kids with ONH. Yes to get all the features I'd have to pay money (which I don't have right now) BUT there's plenty you can read there without paying the membership fee. The link should take you strait to the ONH general information page. On the right side bar are several links that talk about growth hormones, how they test to see if they are needed, how they are administered, for how long you have to give them, and what possible side effect there may be (which is good reading since we may end up looking into, though I really hope the kid is just a late grower).

Anyway the Kiddo seems to be adjusting. He still walks around and plays as though he can't see anything at all. Every day I challenge him a little bit more... making him try to play by himself for longer periods of time. I ask him to give me high fives or make him reach out and take whichever toy he's asking for. After hearing what my dad said I feel far more comfortable (and less cranky) about patching the Kiddo, and really have only one big concer... When we take the patch off at night (30-60 minutes before he goes to bed) his left eye wanders to an extream I haven't really ever seen it go too. I'm assuming this is due to it being very tired. In the morning (prior to patching him) it is back to a minimal drift but I find myself worried about the pre-bed time drifting... I suppose if it continues to worry me I'll just call the eye doc to see if it's normal.

The eyes don't quite have it

Today was the Kiddo's yearly eye doc visit. It was... well... it was unusual.

I'm going to do a little background here so you can understand better why I am so frustrated with today's visit...

Two and a half years ago, when the Kiddo was 1 1/2 years old, we took him to a ophthalmologist (that's an eye doc with a MD behind his name). I don't remember a lot of what the doc said that visit. I know we discussed possibly darkening the lens over the good eye of the kiddo's glasses but decided against it for some reason or other.

Last year because I wasn't all that big of a fan of the first doc and because I didn't know there was a difference between an ophthalmologist and an optometrist we took him to a different eye doc. I loved the guy, so did the Man.

The part that made me the happiest with last years doc was that that I FINALLY understood what it is the Kiddo sees when he is looking through his left eye. He's got Optic Nerve Hypoplasia (for those of you who don't know... that means the left optic nerve is severely underdeveloped and the right one is very slightly underdeveloped). When you cover the Kiddos right eye his left one rolls around... I thought he couldn't see at all with it because he never "focused" on anything. The doc explained that the reason he does that is because he's trying to "find" what he's looking at. He can't see the central focal point, just the peripheral so he looks around trying to find things with that peripheral. Does that make sense? It's like if you put a fuzzy thing in the center of your glasses, you'd have to shift your head (or eyes) so that you could see "around" the fuzzy part. There is no fix, it's just like if he had been born with a club foot or shrunken arm ... they can't "make" a foot grow where there never was one, they can't "make" the optic nerve grow when it never did.

He said that the most important thing for us to do is to protect the eyes (i.e. polycarbonate lenses), because he can't always see things coming at it fast enough to protect it and to realize that it is probably a bit more sensitive to light as well. He also said that fuzzing out the right eye would do more to frustrate the Kiddo then it would to help. The "lazy eye" problem isn't muscle it's focal point so he'd just sit there rolling around his eye and fighting us and would accomplish nearly nothing.

Now that's I've covered that, I can explain my very emotional frustration with todays eye doctor visit. Last week when we went to the pediatrician she told us that she would really prefer we take the Kiddo to an ophthalmologist because of the ONH. I double checked and the eye doctor we took the Kiddo to is only an optometrist so with a grouchy sigh I called up the place we took him to two years ago and set an appointment for this afternoon.

We took him in today and spent 2 hours there. They did all sorts of testing on his eyes. The end result was that they say he is now a +.5 in both eyes!! What!?? He went from being a -3 something in the right (and a -5 something in the left) to a +?? The doc tested him three to four times to double check this because it isn't something that happens (kids don't go from being nearsighted to farsighted). Then told us that the Kiddo didn't need to wear his glasses anymore. That right there had me fighting the urge to sell my left arm to pay for a second opinion. Yes vision changes, yes he's a kid so his eyesight is still developing, and yes he's always been an odd one medically but c'mon that's quite the change! And whatever happened to needing to wear glasses to help protect the left eye?

The kicker, the part that has me hugely upset is that we are now supposed to put a patch over the Kiddo's right eye. All day, every day, for the next four weeks. We're doing this to see if there's any improvement in his vision. Four weeks is long enough for something to change if anything is going too. Alright, this makes sense for most normal patients who have a lazy eye problem. Except the Kiddo's issue isn't a lazy eye and what happened to what the doc last year told me? The part about how fuzzing the right eye would do nothing but frustrate the kiddo because it isn't a muscle issue.. ..???

So today we put on a patch. I spent the entire day trying not to cry as I watched my beautiful son, my amazing handsome strong boy... walk around like he was blind! Play with toys without watching them (because he couldn't' see them). Grasp around for the cup to get a drink and having to have me take his hands and place them on it in order for him to find it. He's so smart he figured out that if he walks with his eye looking at the ground he can almost barely see where he's going out of the top of his eye with his peripheral vision. By the end of the day he was rubbing and rubbing at the eye patch. He would NOT leave it alone... he just so desperately wanted it off.

The man says it could help, and that it's worth the effort to TRY. I'm thinking the whole thing is a really large pile of extra stinky bs. Granted the doc last year didn't have an MD after his name... but it sure seemed to me like he knew MORE about this condition and MORE about how to help it then the doc we saw today. I'm baffled and confused about how having him roll his eye around trying to see, having him stare at the ground so he can even attempt to walk... how any of this is supposed to help him "develop" better vision.

colors colors everywhere

So I always thought I was pretty good with discriminating between colors. I give Kev crap all the time for wearing cloths that clash (that's why he mostly wears black *chuckle*) ...

In the spirit of that thought try out this test of colors... my eyes hurt after I was done but I scored 4 points off of perfect!! Try it and tell me how you do.