Post by momofrussell on May 10, 2010 14:08:42 GMT -5
I updated on FB but wanted to share on the boards what is going on:
Dr just visited. He wants us to see a retina specialist but feels there is probably nothing we can do and that the phthisis (ty-sis) is happening. Appears retina is detaching but too much fluid at the moment (this happens in phthisis). Pressure so low and eye so soft (atrophy) they can't even get a pressure read
We will visit a retina specialist just to exhaust every option but doc feels there won't be anything we can do. Then we do an eye test to eval any possible vision & talk about if/when we remove the eye. Kevin and I have talked in great length this weekend and with the doctor. We won't be keeping Russell in pain and on tons of drops for no reason. If they eye needs to come out, we will be doing it this summer before transition to middle school. We are ok with this....I've cried my tears and felt sorry for Russell enough over the past few days that now I can get back to knowing this is what it is and we all agree we don't want him in pain or put him through tons of drops that won't do any good.
Phthisis isn't "fixable", in a nutshell. We have accepted this.
Thank you ALL for your love, compassion and support. Love you all!
A.
Dr just visited. He wants us to see a retina specialist but feels there is probably nothing we can do and that the phthisis (ty-sis) is happening. Appears retina is detaching but too much fluid at the moment (this happens in phthisis). Pressure so low and eye so soft (atrophy) they can't even get a pressure read
We will visit a retina specialist just to exhaust every option but doc feels there won't be anything we can do. Then we do an eye test to eval any possible vision & talk about if/when we remove the eye. Kevin and I have talked in great length this weekend and with the doctor. We won't be keeping Russell in pain and on tons of drops for no reason. If they eye needs to come out, we will be doing it this summer before transition to middle school. We are ok with this....I've cried my tears and felt sorry for Russell enough over the past few days that now I can get back to knowing this is what it is and we all agree we don't want him in pain or put him through tons of drops that won't do any good.
Phthisis isn't "fixable", in a nutshell. We have accepted this.
Thank you ALL for your love, compassion and support. Love you all!
A.
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I knew my years being a good runner and jumper back in Jr High would pay off! LOL