Wednesday, August 13, 2008

Craniofacial Report

Our trip to Seattle Children's Hospital ended up being quite discouraging. We arrived with a full morning of appointments planned and were looking forward to meeting her doctors and surgeons. Elisabeth is a new patient there and they had literally no medical history on her. So we started at the beginning, telling them about her different conditions, hospitalizations, etc. Of course, they were interested in seeing her most recent CT scan, and I had it in hand. Unfortunately, the people at Inland Imaging in Spokane had not properly loaded the scan onto the disc and the doctors in Seattle could not view the images of her brain that they needed.

"Can't you just call and have them send it to you electronically?" I asked.

"No, the systems don't connect, we have to have a disc hand delivered." says Mr. Plastic Surgeon.

"Well, why can't we send her in for another scan right now? They only take a few minutes." I suggest.

"We like to avoid giving these little ones too much radiation, and since we know a recent scan exists, we would rather wait to see it." replies Mr. P.S.

So no scan, no decisions. But they proceeded to examine Elisabeth's head anyway and concluded that yes, her skull has fused. No surprise there. So isn't that enough? Isn't the knowledge that the sutures have closed enough to schedule a date for surgery and resolve the problem? No, it's not that simple. The good doctors at Seattle Children's have a concern, and that concern is that they don't believe Elisabeth's brain is going to continue to grow. If they perform the surgery, they will enlarge the skull to provide adequate room for brain growth. If the brain does not grow, they have created a whole new problem.

Donald and I don't believe that this is the case. We have noticed her head growing in a very pointy and cone like shape towards the back. If her brain isn't growing, why has there been a change in head shape? Donald brought this fact up with the surgeon, and he agreed that it was a valid point.....but....we have to wait for the scan to arrive.



It seems to be such a common theme with Elisabeth. Ever since she was diagnosed with hydrocephalus when I was 16 weeks pregnant, everything has always been "wait and see". Sometimes I just want to know everything now. I want to know what to expect, I want to know how she will develop, I want to know if she'll learn to walk, I want to know if the seizures will stop, I want to know something now, I want to know something for certain.

One simple word, one wise word. Patience. I will be patient. I will take this one step at a time. Everything will happen in it's own due time. Patiently I will wait....

A smile as we wait for the doctor.

Lorelai found Mickey Mouse...she was in heaven.

Donald and Elisabeth.

There was a lot to look at, including beautiful gardens.

My favorite part of Seattle Children's...a supervised sibling play room. The girls made Olympic torches while we were in appointments.

A total MySpace shot, cheesy, I know.

You've got to love modern travel.

Warming my toesies.

The princess in her new throne...I mean carseat :)

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