Wednesday, February 18, 2009

Visually impaired

After weeks of covering his non coloboma eye, Reuben's eye test yesterday declared him to have a -6 loss in one eye and a -3 loss in the coloboma eye. He is also unable to move his right eye up as much as his left eye when he looks up. I have a referral to a specialist clinic to fit him out with corrective glasses. There is only a 50% chance of success before the Dr will consider surgery. The opthalmologist said the problems were very unique, even in relation to CHARGE.

This is crippling news. How awful it must be for him seeing in such blurred vision and thus having to constantly cover his (weaker) eye. How amazing it is that he's learnt so much despite this. How desperately sad it is that his eyes have deteriorated so bad from October when Jason brought home the news of "fantastic" vision. Did the opthalmologist miss it or is it really deterioration?

I feel utterly deflated. CHARGE is such a cruel affliction, eating away at the senses, visual impairment, hearing loss, no sense of smell, facial palsy, and accessories to match along with the heart surgery, feeding tube, urology surgeries, throat surgeries and the trach. Reuben got hit so very hard medically. We tick off almost all the boxes in terms of how he has been affected.

His eyes are so beautiful, so full of intelligence, love and devotion.

I am working so hard on Reuben's communication, staying optimistic though my mind worries about ASL v signed English and things like, How do I teach him to read using ASL words when ASL language isn't a direct translation of English, the order of words and grammar is different. And yet I keep learning and teaching and then a diagnosis like this hits me in the face with such force. Bitterly cruel. And the irony is we have no choice but to continue to accept the blows. I want to punch CHARGE in the face.

12 comments:

jojo61x said...

What a sad update - I hope the glasses go someway in correcting his sight. Reu overcomes most obstacles that life throws at him and I'm sure he will continue to learn and amaze us all in spite of this

Sara said...

Whack whack whack!
There - I've punched CHARGE for you.
So sorry to hear this latest blow. Reu must be incredibly bright to be overcoming all these obstacles and doing so well.
Huge hugs to all
xxx

hannah m said...

Catherine, Thinking of you, as I know your heart is aching. I wish you peace and comfort as you look into the eyes of your amazing, inspiring and resilient miracle, Reuben.

With love*hannah

amy and mighty max said...

Oh my dear friends...I am so sorry for this latest news. You are in my thoughts.

Love, Amy and Max

(And yes, there have all been times where we want to punch "CHARGE"...very frustrating moments indeed.)

Candi said...

I can so feel your pain... We recently got similar news about Luke's hearing, and I hope for both of us that it is a blip. That things turn out better than they seem right now. The thing I have hated lately is just when you feel like you are on solid ground, it shifts beneath your feet.

What strikes me most when I think about Reuben though, is how wonderfully, beautifully intelligent he is. He amazes me all the time with all he is and all he does, and this is in spite of all the obstacles CHARGE throws in his way.

With love and hugs - I know we could both use them right now!
Candi

skeybunny said...

Catherine,

You have every right to be upset about Reuben's eye findings. I am hoping that I can offer some insight to make you feel a little bit better about things.

First of all, determining a baby's refractive error (near or far-sightedness) is not an exact science--despite what you may be led to believe. Babies are very good at focusing (even with drops!) and readings can be variable. Evan has a decent amount of astigmatism in one of his eyes, and I totally missed it. By Reuben's age, it does get a little bit easier.

Having that much of a difference between the two eyes is not ideal. But having both eyes near-sighted is better than having both eyes far-sighted--there is less chance of developing lazy eye from the difference in prescription. Also kids who are near-sighted tend to notice more of a difference with glasses so they are more accepting of wearing them.

Hugs,
Sarah

ellen charge said...

i want to do that soemtimes sending hugs allwasy thinking u love the pics and updates punching charge in face no wonder i punch my self next time they say ay stop that ill say jsut telling my syndroem off ay

Vivian Solodkin said...

My heart aches with these frustrating results. He is always in my prayers and I love how much he has grown in so many ways. Everyone is right that he has overcome many obstacles and he will continue to surprise us all. You are a wonderful mommy and your patience is commendable. I think you are well overdue for some venting!

Hugs,
Vivian

Jenn said...

Hello Catherine,

It so disappointing to hear about it...

I just want to give you all my support and prayers....

Remember Reuben's strength is in all your love and comfort "mum Catherine and dad Jason"

With care,

JGF

Jacob's mum said...

Hi Catherine,

Damn Charge, it feels never ending sometimes. I am sorry.
But I am amazed they are able to tell you so much about Reuben's vision at his tender age. Was it an examination under anesthectic? We haven't had nearly so much info about Jacob's vision, and he is 5yr old. At Great Ormond St they say until his communication is more developed it is hard to judge just how functional his vision is....regardless of the facts of the things they see like his assigmatism and hs colobomas. That this info still won't tell them how well Jacob will use his vision. The inital expert predicted just light and dark perception for his worst L eye, yet now we see he can pick out pictures with it. Don't give up hope, these kids are amazng and confound experts and expectations. With how bright Reuben is showing himself to be I do think he will find many coping mechanisms and will need you to remind the professional/educators etc..just how hard he has to work to overcome these issues and the need for breaks/regroupng the senses time.
Hugs hugs hugs to you, I know how sad you feel - but he is doing so fantastic in all areas, he is a STAR xxxxxxx

Geraldine said...

Hi Cate

So sorry to hear this latest update on Reu's eyesight. Isn't it incredible that he continues to progress and learn so well and his cognitive abilities are so strong? This ability to learn so rapidly seems at odds with the prognosis on his eyesight. How can he manage to learn so efficiently and consistently if this is the case? We know his hearing is affected but he is learning so much from visual clues.

I'll be praying for you that the glasses can correct his vision and that some laser surgery will be an option to restore this problem.
Lots of love and thinking of you!!

Geraldine adn Mark xx

ypersico said...

if it's any consolation - our children don't know they are limited - they only know they are - and they are wildly clever enough to make the very very best of what they have. Several of the young adults with CHARGE that I know who are legally blind have keen observations and insights which are visually based. Reuben is Reuben no matter what the medical opinion or measurement. Embrace his wholeness and his magic as you do ~ roll with him and let the rest flow over you .... love nad hugs - yuka