Day at Duke

Yesterday was the "Big Appointment" at Duke. We sat down with four doctors and a social worker to discuss Seren's health. Seren's condition is not one that can be fixed. Her condition isn't something for which we can go and find a cure. The goal of this appointment was to get a medical team in place to make sure Seren will be as comfortable as possible and be encouraged to reach her full potential- whatever that might be. I think we really made great strides in reaching that goal at yesterday's appointment.

On a personal level, I really like the Doctors as people and their personalities. This is secondary to their medical knowledge, but I still think as far as implementing strategies for care of your child its important to connect with the team of caregivers. I also thought it was pretty neat that the entire team was female! (I know that shouldn't matter but since I spent years of work sitting in rooms with only men I just thought it was neat to see an entirely female team-you know-girl power and all that:)

As far as her general physical well-being baby girl looks pretty good. She is growing and gaining weight. I think the most immediately productive outcome of this appointment was that we reached a decision on how we are going to attempt to control Seren's seizures. She started on medication last night, so hopefully we will see some progress on that front. Everyone agreed that we thought the seizures were uncomfortable for her. Hopefully the medication will get those under control and eventually stop them entirely. She is still in heart failure but its not causing her any discomfort at this point. We will have a follow up appointment in a few weeks to look at her heart again.

No one knows what Seren will be able to do. We don't know if she will be able to interact with her environment or meet any developmental milestones. I trust the nurses at her facility a great deal more than I trust a neurologist or any other physician's opinion. They have seen many many of these children and they see them day in and day out. Right now the general consensus is that we will have to wait and see. There are children who are initially given a very grim diagnosis and who have serious problems with their brains that are able to surprise everyone and interact with their environment in certain meaningful ways. Some children are even able to make great strides. Seren's condition is complicated by the fact that in addition to being severely impaired she is also blind. Even without the malformation of her eyes, Seren would likely be blind because of the lack of function in her brain; however, I believe the inability to see images makes her condition more limiting.

We probably will never know what Seren understands or feels. There is a good chance she won't progress beyond where she is now. However, there is always hope. The only way we can say with certainty that Seren won't make any progress is if we don't try. So rest assured-we will try and try and try. We will give her every chance she deserves! Thanks to everyone who offered encouragement yesterday-it was a rough day but still a day to be thankful.