"She has a complex dx including, a brain tumor - Cervico Medullary Astrocytoma, Angelman's syndrome, Becker's muscular dystrophy, GI issues (they'd love to do a feeding tube but due to low immune deficiencies they've continuously stalled to do due to complications with impetigo and MRSA) epilepsy (that they've had a hard time controlling) GERD, hearing and vision impairments, and esinphilial esophogitis, and a strong belief of a mitochondrial disorder (this list is vague, I hope I've not forgotten anything). She has monthly MRI's, labs, CT Scans, therapies, and is waiting inpatient programming at our local CHOP's SeaShore house. We have a MR Spectromoty every 6 months. Her latest tests show that her CSF and ICP need immediate attention beyond the help of a shunt, and they've talked about a hemi craniectemy hopefully scheduled this April/June. We just had a hospital stay where my daughter had a Grand Mal seizure, and the hospital couldn't get under control for 4 days. Our nurses know us by first name :o)"
Nilanyi is 4 years old & it is very obvious this little girl has been through so much! She would LOVE to know she is being prayed for & thought about. Please send all her feel better & happy cards to Jellyfish Wishes P.O. Box 263 Germantown, Ohio 45327
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