Email Update 6/11

(This is an email sent out while at Children's Hosptial.)

We are in St. Paul right now at Children's Hospital. They have a pediatric epilepsy unit that we are in; the doctor we are working with is part of the Minnesota Epilepsy Group which is considered to be the best in the Nation if not the World.

What we know so far...Grace has Epilepsy and a rare form at that. The Neurologist in Des Moines we are working with believed that Grace could have an even more rare and life threatening branch, he has only seen 1 case and the doctor we are up here with has seen 20; the doctor that discovered it in the 60's is still practicing has only seen 140. The doctor in St. Paul believes Grace DOES NOT have this! We will know more tomorrow as we are waiting for a Pediatric Eye Doctor to come in, he will be checking for some formation/deformation. This formation/deformation will indicate that she has this rare and life threatening branch.

Grace is on some medication which seems to be helping but for the most part we are just here for observation. They will be determining what medication she will need to be on, we may be able to go home on Monday or may have to stay for more observation depending on her medication. Or we may be able to go back to Des Moines and stay at Blank while they regulate medications.

That's all we know right now. Joy and I are doing well, considering all of this. We have come to the realization that Joy has been training all of her life for this with her working with mentally/physically handicapped and her OT background. For me this is going to be another lesson in patience.

I think Joy and I are going to get away for a little while, I'm taking Joy to the Minneapolis Sculpture Garden (Big Spoon and Cherry, look it up on the web you will probably recognize it) and then we are going to get something to eat. We have to get out of the hospital every now and then just to feel normal.

We've got lot of pictures of Grace; I'll have to start up her blog again so we can show everyone what is going on.

Thank you for your prayers!