We had Lucy's visit with the pediatric eye specialist (that takes less time to type than the 'o' word!) that Dr. Wrubel referred us to. I knew that one of Lucy's eye wandered and I just assumed that they would tell us that the surgery would correct it or that she would grow out of it or something. But the first thing that his P.A. said was that both of Lucy's eyes have strabismus (the medical term for an eye that turns outward) but that Lucy is good at controlling it in a sense. She can independently switch from one eye to the other, which she said was good. We saw the doctor and in basic terms he told me that what was wrong with Lucy's eyes was not going to be repaired by her cranio surgery and that it would require an additional, though less extensive surgery. And he said that her vision is probably already set, and even with the surgery she would probably never see with both eyes the way that most people do. She'll be able to see just fine, but it won't be the same "3-D" way that you and I see. It's almost as though you were covering one eye. You can still see everything just fine, but distance and position is a little hard to tell.
The problem with Lucy's eyes is that the muscles holding her eye ball in are just slightly in the wrong place. The surgery would move two of the four muscles back where they are supposed to be and he said that would correct her problem aesthetically. He said it's an outpatient procedure, but the next step is to talk to Dr. Wrubel about whether we should do the eye surgery prior to her cranio surgery or after. He was thinking after, which I believe Dr. Wrubel will probably say also. Another concern is that the surgery would require general anesthesia, and again, with Lucy's recently diagnosed apnea, general anesthesia isn't such a great idea and should be limited to only medically necessary times and as little as possible.
Here's my feelings about all of this: I'm a little disappointed. I thought it was just going to be an easy thing to fix or outgrow. I hate the word 'surgery' and I was sad to hear it again today. But, I don't mind if the surgery has wait even until she's a year old or even older if it's just going to be an aesthetic fix and won't correct or damage her vision either way. I also know that doctors tend to give you the worst case scenario. The cranio surgery may correct it. She may be able to see with both eyes for all he knows! :) I also know the God that made Lucy and I pray daily that He will heal her and make words like "never" seem pointless.
I think it's just been a hard week for me and Wesley as parents. It seems as though the bad things are piling up on our sweet girl and it's easy to get stressed out and fearful about it all. But we just keep reminding ourselves that God is in control and that a year from now, this might all be a distant memory and we won't even remember what it was like to be afraid that Lucy was going to stop breathing or that she wouldn't be able to see correctly.
And I know that we did genetic testing way back when she was a little baby, and it came back that there were no genetic abnormalities present to show that she had any syndrome related to her craniosynostosis ... but the more things that come up with Lucy and the more research we do, I'm not entirely convinced that she may not have a mild case of Crouzon's Syndrome. Of course, if you look up that syndrome and see pictures of the patients, you would think, "No way does Lucy have that!" but that's why I say a very mild case. There are just too many things to think that they just all randomly happened and are not related to something. I e-mailed the geneticist again today just to ask his opinion and to see if there is any way we could have missed something. It doesn't change anything one way or another if she DOES have Crouzon's, but I think it would help doctors to better understand her conditions. It would also let us know that there is a risk that any of our future children may have the same problems, and it would let Lucy know (when she gets old enough to care about this) that there is a chance her children would have it, too. It's not life-threatening, and if she has a mild case then you might never see anything about her that would make you think she had it unless you knew all the other symptoms.
We're ready for all of this to be over! Lucy has her E.R. followup/6 month visit on Monday with her pediatrician and her surgery is right around the corner!
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