Today we received the results of Dottie’s MRI. We had been hopeful for some positive news from this, but once again, our hearts were crushed. 

Dottie’s brain, in its entirety, did not form correctly. Connections that should be there, are not there. She is missing key pieces and other pieces are impacted by abnormalities. Her hormone levels and ability to balance things like sodium levels and fluid output is impacted. Her lung strength and ability to breathe without support of some kind is impacted (also by the anti-seizure meds they have her on). She has what is called Refractory Epilepsy, a type of epilepsy where seizures continue despite the use of two or more appropriate anti-seizure medications. It’s also called drug-resistant, and it can be challenging to manage. Right now her seizures are electrographic (without any physical signs of seizure activity), but as she grows, that will change and her seizures will be accompanied by physical signs. The abnormalities and lack of proper development in her brain will impact her ability to learn and be able to do things that normal babies do. She may not even be able to learn how to bottle feed and do so safely. We just don’t know. Dottie is going to have to show us what she is capable of. All of these things will follow Dottie throughout her life. Her Aicardi Syndrome is severe. And on top of all of this, she has the challenges from the cleft lip and palate. 

Right now, we are working on her breathing support, and trying to wean her off of a CPAP machine and back onto the high-flow cannula. Hopefully that will happen sometime tomorrow. We just have to see. Once she is off of the CPAP, we’ll be able to assess her ability to swallow and see if she’s able to take a bottle feed. It’s one small step at a time right now. Please keep praying for our girl. We’ve got a long road ahead.