Still -13*

Some people say I am too sensitive. I might be. I know having a kiddo with issues has made me a whole lot more sensitive to a whole lot of different things.

I think it's a good thing.

If not used properly I suppose being sensitive could keep me from putting on my big girl pants and facing the world. Or it could have me getting defensive at every little thing thinking that somehow things are personal.

This past week Liam had his yearly eye exam at Duke. I'm not sure the position/title of the first person we see when we go but we always see someone in training who does some tests and records it all in his chart. This time the lady put up a large Minnie Mouse toy that spun around and lit up. She moved it left, right, up and down seeing if Liam would track it. He did it all but the going up. He doesn't visually move his eyes up.

Then she asked me if he would reach out and touch Minnie.  I told her that yes he would, but that I would have to tell him to do it (he just doesn't do it on his own because of how much work it takes).

She then put Minnie in front of him and I asked him to touch Minnie. As he started to move his arms she put Minnie back on the counter and started to write in his chart. For about a half a second I was flabbergasted and then went into advocate mode. I told her that he has CP and you have to give him time. He can't just reach out and grab something the moment we ask. He has to think about it, then think about what arm to use, how far he needs to reach, and then he has to think about activating the right muscles. It's a complex process for him and you have to give him time! 

I took Minnie off the counter and put it back in front of Liam who was still trying to bring his arms into place. He looked at Minnie and smiled and slowly got his hand onto her as the lady exclaims, "Oh, look at him go for it!".

Arghhhhhh.

After that she said they had to dilate his eyes.

And then she asked me, "Should I just put the drops in his eyes or do you want me to tell him what I am doing?"

Seriously? You have to ask me that?

I. was. perturbed.

Of course you tell him what you are doing!! He is a human being! He can hear. He can see. And he can certainly feel your hand prying his eye lids apart. Why on earth wouldn't you tell him what you are going to do to him??

I told her so with out so many exclamation marks.

This is a pediatric ophthalmology department. You assume that all patients understand what you are doing and saying and you treat every patient the same: with respect, kindness and patience...just like you would want to be treated.

If she didn't know that before. I hope she understands that now.


*That is Liam's needed correction for his near sightedness. It's unchanged from last year.

CVI Assessment and *blindness

What does Liam's blindness mean?

Well, Marcia (Liam's VI teacher) and I did a reevaluation of Liam's cortical visual impairment this past week in order to have an updated report for the school system.

CVI is rated on a 10 point scale with 1-2 being the worst and 9-10 being the best. Each of these numbers then have phases of I-III.

When Liam was under one year of age he scored very low on the CVI scale. We didn't do any assessments on the scale for him then because it was just so bad. He would have been at the most, a stage 3, phase I. It wasn't until Liam was 1 1/2 to 2 years of age that we really started to see growth in his vision. When we finally assessed Liam a year ago, he was at stage 5-6, phase II. He was still lacking in facial recognition, distance, colors and details, etc.

I knew Liam's vision had continued to get even better as he grew through his twos and when we evaluated him this week we were excited to see that Liam had moved up the scale to stages 7-8, phase II-III. He's almost to a stage 9 in certain areas of his vision!

Liam's continuing struggles are with distances of over 4 feet, novelty (new people don't garner eye contact, but he's starting to do so), field loss (he doesn't look up), complexity of the environment and what you'd call your natural eye reflexes (he doesn't blink when you bring your hands near his eyes).

With the new assessment we have new goals to work on and I truly expect his vision to still continue to get better. With the oxygen treatments we've done and continuing use of supplements for brain and eye health, we've seen some wonderful changes already over the last year.

With the struggles Liam faces with his CP, it's awesome to have his vision not be a major contributor to his difficulties.

*It's important to remember that being blind does not mean that you have zero vision. Liam is still considered blind because of his visual perception issues. While he has pretty good functional vision, it isn't whole vision. And yet, even though he is considered blind, for the  most part, we don't consider him as such.

Reflections

 We were told not to use mirrors for vision play for Liam because it can confuse him being able to see two images at once. With his vision impairment generating from the connections in the brain, it's a guess right now as to how and what he sees. And since Liam has had a hard time seeing faces I haven't bothered too much with showing him a mirror.

At Liam's therapy clinic all the rooms have one wall that is floor to length mirrors.  I have put Liam in front of them before, right up to the glass, to see what he would do. Once in a while I would get a spark of interest but not much more than that.

But, this past week, I put Liam in front of the mirror and asked him who the handsome boy was looking back at him and he got very interested. So much so that he was trying to roll into the mirror and was laughing at himself! When we moved to our next therapy room I did they same thing, put him in front of the mirror, and he got even more excited.  It seems that Liam's vision has gotten better and not only can he see himself in the mirror, he is able to understand what he sees through it!

So, when we got home, I showed the kids how Liam was reacting to himself and put him in front of our mirror. This is what he does:

I can't believe he is finally seeing himself!

Vision update

At Liam's first appointment with Dr. D. last month, she put a black and white drum in front of him and spun it. She said it was a tool used to check for cortical visual impairment (which Liam has been diagnosed as having). She spun the drum and said that proper visual response would be for the eyes to "jerk" in the opposite direction that the drum is spinning. Liam's eyes didn't jerk. As a matter of fact, he didn't pay any attention to the drum. He was looking everywhere but at the drum.

She then dilated his eyes and checked things out before putting on a pair of spectacles that would be in his corrected lens. She spun the drum again and "thought" she "might" have seen a bit of "jerk" with the lenses on. His eyes were dilated so big that I didn't take much stock in that assumption.

We are now a month out from our initial appointment with Dr. D. and she wanted to see him back to see how he was doing with his corrected lenses. She asked me how I thought he was doing. I told her that I thought he was doing fabulous because before the glasses he didn't care one smidge about Baby Einstein DVD's and now he will watch them! That, to me, was incredible!

We then sat in the chair and she put the CVI drum in front of him again.

She started spinning it.

And Liam started laughing at it!

He was looking at it and his eyes "jerked"! How awesome is that? She said she really felt that Liam's CVI will start to fall by the way side now and that his vision should improve a lot now that he has the corrected lenses!

We do still have the problem with his esotropia (eye turning in) and we will address that at his next follow up in one month. She wanted to give his eyes ample time to adjust to the glasses before resorting to patching.

I really should pray about that because I honestly have never done so for his esotropia. I just haven't thought to do so as all my prayers tend to focus on head control (as if asking for only that one thing will make God more inclined to do it). I would LOVE for Liam to start focusing both eyes at the same time so he doesn't need patching. Hmm. I think I've had my mind opened to the fact that I should be praying about it. So, I will.

*Oh- and yes, those are Liam's glasses and my glasses on my laptop.

I figured you were wondering.