Miranda's Expenses

I am Miranda's mommy. My poor baby has been super sick since she was 6 weeks old. She is about to be 18 weeks old. She is currently having non stop seizures as a result of an extremely  rare brain condition called Ponto Cerebellar Hypoplasia. We have been in Loma Linda and Childrens Hospital of LA with no luck in controlling the seizures. They are extremely medicine resistant. My extended leave and maternity leave had ended. When I stay with her in the hospital it requires me to call out of work. We just got home yesterday and may end up back in the next day...We have tried so many different things and have no luck. She was on Oxygen for 4 weeks and I keep my air on so the heat in the desert doesnt increase her seizures. Stimulation and irritation cause her to cluster seizure. Where she has alot back to back with only seconds between them. We have a very long road ahead of us and her prognosis for the brain condition is very poor. Most kids dont make it past infancy.