We are in need of your prayers again for Ayla. Over the past couple of weeks we had notices two birth marks, Hemangiomas, developing and darkening on Ayla's face. One on her right eyelid and one on her right cheek. This is all on the same side as her cerebellum problem. Also in the last two weeks I noticed that she was not able to open her right eye fully. This really worried me. So I took her in.
Because of the rapid growth of Ayla's Hemangiomas and her brain malformation it has been determined they are all connected, a condition called P.H.A.C.E.S (heart is for heart and a is for aorta). The eye one has also started to affect her eye development. So we have to do aggressive treatment (Hemangiomas are usually left alone and go away by themselves, but can be helped along with steroid treatments or in Ayla's case blood pressure meds). We have to take Ayla to see a Children's Hospital Cardiologist. She will have to have an MRI (unless the one done at birth has all the info...praying for that!) done on her heart and her aorta (at this age she would have to be sedated). Then if all looks good she will start blood pressure medicine at home, after spending 3hrs at the dr's office observing vitals for a reaction. If things are not okay she will be admitted to the hospital for up to 36 hours and start the medicine there.
We also have to have Ayla wear an eye patch 15 minutes a day covering her good eye to help strengthen the weaker eye.
Pray:
Ayla's eyesight will develop correctly
Her blood vessels and heart are fine
No further complications
Mom has the mental and spiritual strength to get through this
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