Monday, March 30, 2009

Mom Knows Best

Okay, so lets just say I have slept all of 6 hours in the last 3 days, and not all at once. Which is why I somehow confused Opthamology with Neurology. His appointment today was with the Pediatric Opthamologist. And apparently there is more than one in the city, this guy has a sexy British accent and was super nice. I liked him a lot. He took us seriously and said that because we're concerned about his vision and have said that he doesn't look like he is seeing as well as he should be, that means something to him.

Aaaand he confirmed what I already knew, and what I already told all of you earlier on in my blog. Skyler can see shadows, and light, and we're not sure if there's much else. His optic nerves are small, his eyes technically are fine, his brain is (probably) fine, but the nerves connecting the two are small and don't let in much light which means he cannot see much. The doctor is hopeful he says that he might be able to see shapes and may even be able to walk without a cane. We are going to monitor him over time, we're going back in six months. He may be able to focus a little better later on. BUT there is nothing that can be done about hypoplasia. His optic nerves are just like that, and no one can fix it.

And remember I mentioned something called septo-optic dysplasia? Well I asked him, and he said yes that is the reason the endocrinologist recommended he check Skyler out, and after he was done his examination I asked if it fit, and he said Yes. This is consistent with the diagnosis of Septo-Optic Dysplasia or de Morsier's Syndrome. In other words ladies and gentlemen, I was correct. So our lovely new opthomologist is referring us to the CNIB which is the Canadian National Institute for the Blind. There we will get involved with the Early Intervention program. Which will be awesome, lots of resources and help with his development from early on. I really appreciated that the opthamologist said that if we the parents were concerned about his vision then he was as well. I liked that he took us seriously and didn't talk down to us like we were idiots. Plus the sexy accent didn't hurt things either.
Oh and one more piece of good news. The opthamologist said there is no reason to believe that it's hereditary. He told us not to worry about our future children having it.

So to make my point, don't doubt yourself too much and if you know in your heart something isn't right don't let people tell you to just forget about it and not to worry about it and make you feel like you're crazy. Oh and as for me and how I'm holding up, I'm great. I now know what is wrong with his vision more or less, and I know what we can do about it. It can't be fixed but we can definitely work with it. And Skyler? Well he is as happy as he always was.


Stacie said...

I am so happy to read that you got answers! Well, confirmation rather, since you did your research and suspected what could be going on with Sky's vision. Kudos to you!

Sky is so adorable. He just gets cuter and cuter. Thank you for sharing with us.

She said...

Oh my gosh. I just want to rub and squeeze that bald little head. He's so cute!

You seem like you have a great attitude in a tough set of circumstances. It must be so great for you to feel like you're being heard.

Karen said...

What a great mom you are. I am so impressed with how well you're handling this. I know that part of you probably hoped it was all in your head, but I was always partially relieved that I wasn't being paranoid or crazy and when I suspected something is going on with my kids. It's not that I'm happy they're sick. Just that I'm relieved that I can trust my own judgement.

When Skylar is older you may look into vision therapy. It's not about making his eyes work better, which would be pointless since the doctor confirms that that's not where the problem is. It's about helping train his brain to coordinate what he's seeing with his right eye with what he's seeing with his left. It helped my son tremendously, although his problems were very different.

In the mean time, just keep enjoying that beautiful baby boy of yours. Just looking at his picture makes me jealous. I miss my kids being so little!

Stacie said...

Your comment on my last post moved me, really. You are truly amazing. Thank you.

And, you're right we can do it!

niobe said...

The title of your post is absolutely correct. A doctor, however well-trained and educated, only sees a child for a limited amount of time. The people who are the best advocates for the child and who understand him the best are almost always the parents -- especially if, like you, they've done the research.

Anonymous said...

excellent (it is hard to remember that you in the end do know best) You my dear are doing so remarkable and you are so strong...Sky is so freaking cute I wanna bite his chubby ckeeks. The bond that you two will have will be even stronger than if he had full my opinion. he has all his other senses heightened because he needs them to be and its as if he prepared for this in your womb...he will always feel safe, secure and loved for many reasons. I dare someone to find a child more loved than him...chin up lady and I'm sorry I've been missing so long!!

CLC said...

He is so frickin' cute. I can't believe how big he has gotten.