The past 2 weeks have been a whirlwind.
$120 in doct.or co-pays and we are at the same place we were last Tuesday. Although a bit calmer, we dont have any more answers than we did then.
The eye surgeon agreed with the eye doctor who initially diagnosed G with Marfan Syndrome. Her lenses are dislocated and need to be removed soon to preserve her otherwise good vision. Thanks Doc; I have been in your 3 waiting rooms for 2 hours and that is all you have to say!?
After a few emails and phone calls, I finally got in touch with Joh.n Hopk.ins Comprehensive Marfan Center. Now Iam waiting (yep, more waiting) to hear back from the genetic counselor for a family history conversation and setting up an appointment for G.
Actually, I am really looking forward to that. I know it will be a long, emotional day but I feel like at least we will get some answers and formulate a plan. Without a plan, I am hopeless.
For now, we are just coasting.
1 comment:
I also have a daughter with Marfan Syndrome. She is currently 4 but will be 5 in October. She was diagnosed around age 2 (spontaneous mutation . . . no history in our family) but we will be going to get the official blood work done sometime in the future at a children's hospital b/c they say they are finding more people with symptoms like Marfan Syndrome but that have other things. (I found your blog through the Marfan News Blog.)
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