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5 hours ago
At 4 weeks old & after major heart surgery, Elyse was diagnosed with PHACE Syndrome, a condition that describes a group of findings including:
P - Posterior fossa malformations
H - large cervicofacial Hemangioma
A - Arterial anomalies of the head & neck
C - Coarctation of the aorta & cardiac defects
E - Eye anomalies
S - Sternal cleft.
Elyse has: H - A - C
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About Elyse
2 comments:
Love the personalized bed.
Olivia had to wear a patch when she was under a year old - I think it was probably easier than it would be now :-). I feel for you - it's hard to try to get them to do something they don't want to do! good luck with it...we didn't have her wear it anywhere near the amount that they told us to have her wear it, but at her last visit over a year ago, they said her vision was perfect & they didn't need to see her again, yay! hope it goes that well for you guys
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