Scenerio #1: Mallorie is NPO for a certain number of hours, has an IV placed after who knows how long, is put under general anesthesia, and has her eyelids sewn together over her right eye. We are told it will probably be for life. We wait anxiously through the surgery and the recovery time, and drive home.
Scenerio #2: Mallorie has an appointment with a new opthalmologist. The resident she is helping to train, and the ophthalmologist both spend hours, asking good questions, and really listening to things we can tell them about Mallorie. Things you wouldn't know about her if you simply knew her gene make-up. Or knew another child "like her." The ophthalmologist does a really thorough exam, and agrees that surgery is NOT the best or first option for Mallorie. And that really good lubrication and effective taping at night can possibly accomplish the same thing. Tells us that we are doing a good job of this right now. Gives more specifics (like using an ointment at night with the taping, and not just a gel or drops). Says she will see Mallorie for a follow-up appointment in 2-3 months, unless we have a problem and need to see her sooner. Then we can just call, and have her seen on an emergent basis.
If I knew how to dance, I would have to record it for all of you to see right here. We had scenerio #2 today. And I am dancing in my heart. The new doc did say that in children under age 5 yrs, if an event prevents visual input from reaching the brain for any prolonged period of time, vision is lost. Permanently. I choose today not to worry about that. If that is the case for Mallorie, then what is done is done. It is still preferable to other things that could have happened to her, and I choose to focus on the gift of being free to cancel out on the surgery which we felt rushed into, and had no peace about. I am thanking God for the respiratory problems that made us have to cancel the surgery plans, and gave us time to meet this new doctor. Plus, I know some really happy children who are visually impaired and even blind. I don't expect Mallorie to start losing her joyfulness any time soon. And her unaffected eye is good, externally, and in the back (inside). She doesn't need glasses, and everything about that eye looks good to the doctor.
I left that office today with a weight off my shoulders and so grateful for good medical care, which includes listening, listening, listening.
The Trisomy 18 Connection
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