
Posted by ELIZABETH
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on 6/1/2005, 8:22 pm, in reply to "Daughter diagnosed with CES - Help!"
207.200.116.204
Dear Susan and Chris,
Our daughter, Olivia, was just diagnosed with CES. She is 10 months old now, and it seems like we have been to every specialist you could imagine. When I was pregnant with her, I had every test and probably 3 dozen ultrasounds, even 3d. Every test and ultrasound showed that our daughter was perfectly healthy and normal. But when she was delivered, the ped. dr. became nervous because she was so small, her rectum was misplaced (extremely close to her vagina), and because her face seemed disproportionate. Once the geneticist became involved she ordered a bunch of tests. In October, we found out that she only has one kidney and stage 3 renal reflux. Then last friday, under anesthesia for an eye exam, her opthamologist verified that she does have cat eye shaped pupils and possible colobomas. However, Olivia is very healthy and only very slightly developmentally delayed. She is babbling and saying a few words, and she is not crawling but she is rocking on her knees. As far as Olivia goes, she just needs and requires a little bit more to get hew going, but once she starts doing something watch out because she just keeps on going.
I hope you know that Olivia and your baby are extremely special, and oh my gosh their eyes. To die for gorgous. It seems like wherever we go, people always remark how beautiful they are.
All the best,
elizabeth
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