So we were pleasantly surprised to find out that his vision had actually improved in his Coats' eye! After the exam, the nurse puts the drops in his eyes to dilate them - this is actually the part he hates most! Then...the wait for the drops to take effect. The nurse dims the lights in the room, and puts Tom & Jerry on the little TV for him to watch. Here's a photo of him doing just that...
But before he laid down, while it was just the two of us in the room, he walked over and sat down and said,
"I'm ok with having Coats' Disease".
I said, "You are?"
He said, "Yeah"
He continued, "I could have a pencil that doesn't write very well, but I could still use it. My motorcyle doesnt work very well, but I can still ride it...(pause)...I can't see very well with this eye, but I can still see".
I was amazed at the wisdom his little mind had worked out.
I started to say, "You're right. You, know, nothing in this world..."
He finished for me, "...is perfect".
We then talked about a place where we would one day be perfect.
...Then he laid down on the cot to watch Tom and Jerry and waited for Dr. T to come in.
7 comments:
I'm so happy for you both! This is really good news. And I cried when I read about what Joey said - it's amazing how children are so perceptive. God bless your little boy. We're due for an eye exam in late Feb. Keeping my fingers crossed.
Hi Writing Mommy! Nice to hear from you! I have checked your blog recently to see if you had any updates and was wondering how you were doing. Keep me posted on your appt in Feb.
Liz
What a beautiful perspective Joey has...I am going to pass this on to my son.
Hi Liz,
I haven't posted an update to my son's eye exam today but just wanted to ask you a question. He's been diagnosed with an epiretinal membrane - some kind of coverng over his retina that is pulling it upwards. And the doctor has recommended removing it surgically. We discovered it during his eye chart test, where he couldn't read at a distance with his affected eye (he could the last time - 6 months back). I wanted to ask if this was the same as the cataract you've spoken about in your blog. Thanks.
I don't think they're the same thing. A cataract is a cloudy area in the lens of the eye. I haven't heard of the epiretinal membrane before. What our Dr. explained to us is that because Joey has this eye condition, the eye will "age" quicker than the average eye. Cataracts are usually found in older people. I wonder if that is the same case with the epiretinal membrane. I googled it and read that it usually occurs in people over 50 yrs. Do they want to do surgery right away? Keep me posted - I wish you the best.
Hi Liz,
Yes, I've done a fair bit of reading since I last messaged you. This isn't the same thing as a cataract - another name for this membrane is a 'macular pucker'. And surgery really is the only option I've come across in my reading so far. His vision is cloudy in that eye although he's able to read and see fine with both eyes. I asked about patching, but the doctor said that wasn't going to help at this point. My son has his final semester exams starting tomorrow, so we're delaying it until the end of the month. I'll be able to get a second opinion by then, too. Will keep you posted. Thanks for being there to talk to. It really helps.
Hi Liz,
Thanks so much for writing. I'm not taking him to another doctor, but yes, I'm getting another opinion. He really hates the dilation phase, so it might be really tough to try that a second time around.
It would be great if you could give me the contact information of your doctor - I'm not sure if he'd be available for long-distance consulting, though. I really appreciate this, Liz. Thanks very muc.
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