First, I have to say “WAAAAAAA HOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!” I found out this morning that Bing’s surgery has been completely funded! Yes, that’s right. Little Bing will soon be fitted for his new leg, thanks to the generosity of people who see the value of every child – even the ones we’ll never meet. Of course, Love Without Boundaries still has other children who need medical care. Like Hao, a little 9 year old girl who needs $2450 for a Cornea Transplant. Donations are tax deductable. Hey, I'm just putting it out there.
Now, about Ying’s eyes. When I took Ying to see the ophthalmic plastic surgeon last month he diagnosed Ying with a condition called Blepharophimosis. Blepharophimosis is a collection of birth deformities. They include: small eyelids that are short in vertical dimensions in some cases causing the lower eyelid to be too short to adequately cover the eye (in Ying's case, it appears that the lower lid rolls in), eyelids shorter from side to side, eyes spread apart from each other that make the nose look like it is flat, ptosis, arching of eyebrows, bones above eyes slightly flattened, and a fold of extra tissue near the central corner of the eye opening. Yeah, that pretty much describes my Ying.
So, I did a little research on Blepharophimosis. It is an extremely rare genetic disorder. This kind of surprised me because Dr. L diagnosed it very casually. So casually, in fact that I didn’t even ask any questions. OK, I’ll admit it – I thought it was just what you call it when someone has both ptosis and epiblepharon. I couldn’t let go of the fact that it is really rare. So, then I started to wonder how much Dr. L really knows about it and how many times he has seen it. Then I started to worry about whether or not his treatment plan is the best thing for Ying. So, I started looking around to see if I could find a doctor who could be considered a “specialist”. Well, the internet is a wonderful thing. I found a support group for families with Blepharophimosis, and a woman from Ft. Wayne told me that there is a doctor at Riley Children’s Hospital who has treated several kids with this condition, including her daughter. So, we have an appointment at Riley on May 11th. I just want this guy to confirm Dr. L’s diagnosis (or not) and tell me if going ahead with this particular surgery is the right way to proceed (or not). I’ve never asked for a second opinion before, but then again, I’ve never been told that my child has a rare disorder before, either.
If the second opinion doc agrees with our current treatment plan, Ying will have surgery as scheduled on June 8th. It is out-patient surgery, and supposedly she will be up and about by dinner time. Whew. Parenting isn’t for the weak!
Now, about Ying’s eyes. When I took Ying to see the ophthalmic plastic surgeon last month he diagnosed Ying with a condition called Blepharophimosis. Blepharophimosis is a collection of birth deformities. They include: small eyelids that are short in vertical dimensions in some cases causing the lower eyelid to be too short to adequately cover the eye (in Ying's case, it appears that the lower lid rolls in), eyelids shorter from side to side, eyes spread apart from each other that make the nose look like it is flat, ptosis, arching of eyebrows, bones above eyes slightly flattened, and a fold of extra tissue near the central corner of the eye opening. Yeah, that pretty much describes my Ying.
So, I did a little research on Blepharophimosis. It is an extremely rare genetic disorder. This kind of surprised me because Dr. L diagnosed it very casually. So casually, in fact that I didn’t even ask any questions. OK, I’ll admit it – I thought it was just what you call it when someone has both ptosis and epiblepharon. I couldn’t let go of the fact that it is really rare. So, then I started to wonder how much Dr. L really knows about it and how many times he has seen it. Then I started to worry about whether or not his treatment plan is the best thing for Ying. So, I started looking around to see if I could find a doctor who could be considered a “specialist”. Well, the internet is a wonderful thing. I found a support group for families with Blepharophimosis, and a woman from Ft. Wayne told me that there is a doctor at Riley Children’s Hospital who has treated several kids with this condition, including her daughter. So, we have an appointment at Riley on May 11th. I just want this guy to confirm Dr. L’s diagnosis (or not) and tell me if going ahead with this particular surgery is the right way to proceed (or not). I’ve never asked for a second opinion before, but then again, I’ve never been told that my child has a rare disorder before, either.
If the second opinion doc agrees with our current treatment plan, Ying will have surgery as scheduled on June 8th. It is out-patient surgery, and supposedly she will be up and about by dinner time. Whew. Parenting isn’t for the weak!
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