We are preparing for the hospital tomorrow. Emily will be admitted for a day or two and have an overnight video eeg so see whats going on with her seizures and to start ACTH again.
Emily is weaned off the ketogenic diet now because we have decided to do another round of ACTH.
If you remember it was the very first medicine we tried when she was diagnosed with IS.
This is what it did.
She got very swollen, stopped smiling and well stopped pretty much everything else.
We are very aware of the risks but we also are VERY aware of the risks of uncontrolled spasms and seizures.
We have postponed her surgery until the swelling has gone down, so probably some time this summer is when she will have it.
So I ask you tonight to please pray. Pray that we can get our miracle. Pray that we can control these horrible, life altering, life ending seizures.
We are desperate for a cure.