Prayers Needed.

Preparing for Henley's surgery in March, the neurosurgeon in New York felt it would be helpful to have a "flex and extension MRI" study done. For several reasons this is important information to have. Basically, they want to see what happens to Henley's brain when she tilts her head down and back. To do this MRI they generally have to hold a very uncomfortable position for about 30 min each way. Because it's difficult enough already to get children to be perfectly still in an MRI, this procedure at Henley's age requires her to be sedated. Anesthesia is the absolute scariest thing in Henley's world. But alas, this is part of her world and so sometimes we have to do things that really stink. 

Today I got an unusual phone call from Cooks Radiology about 11:00. The man I talked with said that their neuro-radiologist had just reviewed Henley's scans from September and felt this procedure was going to be too dangerous to do under anesthesia due to the severity of her Chiari. Basically, they are afraid it might completely cut off the oxygen and or fluid to her brain and she wouldn't be able to tell anyone. They went back and forth with our surgeon in New York, but the bottom line is that it's up to the Neuro-Radiologist to make that call. SO, with that said we are going to try to somehow get these images WITHOUT anesthesia and we will have to just get what we can with Henley's cooperation. She is still pretty young to even try doing an MRI without anesthesia so we need some major prayers over her tonight and tomorrow. Please pray for her to have peace and to be able to get this done without a panic attack like we saw in Boston. If she can make it through this procedure, we likely won't have to do sedation ever again for MRIs which would be HUGE for us! 

The guy I spoke with at Cooks was super concerned about Henley and wanted to do everything he could to help make her comfortable with a super uncomfortable procedure. He asked if I thought it would be helpful to let Henley come down to the hospital tonight for a "trial run" and to have a "field trip" of sorts. 

He agreed that we could all eat dinner with our respective families and then meet up at Cooks tonight at 7:30 for a field trip. We are taking all the kids in hopes that Henley can show her siblings around her hospital. Sometimes when we can put her in a leadership role it helps to lessen the fear factor she would normally have. 

So here we go. Wish us luck and say a prayer. Hoping tonight goes well.