Eventually I'll write up this whole experience in more detail.  I'm too exhausted to do it now.  I hope today is the worst of it.  Poor little baby has his head swollen so much that both his eyes are shut when he is awake.  He can barely see out of a small slit in one eye.  Brendon cannot tolerate being touched.  When we try to pick him up he moans like a wounded kitten.

Brendon came through the surgery fine.  His face is swollen about twice its size, and his eyes are swelled shut.  He's in a lot of pain right now, but he's doing better every day.

Right now, I'm feeling shakey and tearful.

Today is the day we leave.

After Keith took me out to dinner, he drove me out to the airport to check on our tickets.  The parking lot attendant had to search the truck since we are on orange alert.  The counter person at Alaska Airlines looked up our reservations.  When she saw two Pamelas, she thought that I had double booked.  Then she asked,

"Are you Pamela, Sr., and Pamela, Jr.?"

"No," I answer, " my son married a girl named Pamela."

When I got my antibiotic prescription filled at the Clinic, the pharmacist asked me if I had a granddaughter named 'Pamela', too.

Nope!  We've got a grandson, not named Pamela.

"I was eating a banana, and Brendon kept grabbing for it," said Pam.  "So, I put it down where he could reach it, and he stuck it in his mouth and started sucking it."

Brendon has a new tooth.  It is on the top just to the right of the front teeth.

Tomorrow night we head out to the airport to fly Brendon and Pam to San Diego.  Pam came over yesterday and did her laundry.  Brendon fell asleep while he was here; so he spent the night. :)

I sit here typing while holding my sweet little grandson in my lap. He's dozing as he sucks the milk out of his bottle. His hair is sweating on my arm. His little hand is clutched against my chest. His legs wrap loosely around my waist. Cuddling a baby is the most satisfying thing in the world, methinks.

I crashed yesterday.  I fell asleep on the couch and didn't wake up until midnight.  Of course, that means another sleepless night.

We have our reservations, and I got the tickets, finally!

It is cheaper to fly from Fairbanks to San Diego than it is to Los Angeles.  Besides I am more familiar with the San Diego airport, and it's not nearly as big as LAX.  Great-grandma Rae lives in Oceanside which is about half-way between San Diego and Los Angeles.  So we can stay at her house to rest up from the flight before going to the hospital.

Our flight is on March 23.  We will stay in Oceanside on Sunday night.  Then we plan to drive into LA on Monday to find the Children's Hospital and a place to stay.

We see the neurosurgeon for Brendon on Tuesday, March 25 in the afternoon.  Then we will know if he needs the operation.  From the tests so far, I have no doubt he will need surgery.  His forhead is bulging more every day from the craniosynostosis.  He's a cute little boy in spite of this problem.  I've seen some really deformed faces on other little ones.  Brendon's pediatrician said the operation may be only cosmetic, but it could later cause mental retardation.  What a choice!

The hospital said that if he needs the surgery, then he will be admitted on that same Tuesday.  That's why we want to have a place set up already, hopefully as near the hospital as possible.  Pam is going to look into staying at the Ronald McDonald house.  One is located near the hospital.

If Brendon doesn't need the surgery, then the rest of our trip will be vacation.  :) Our return tickets are for April 3.

I lay awake after looking at those craniosynostosis websites.  My decision to go wavers a bit.  I don't know if I can do this.

My sister sends me a URL that she said was the best site she has found showing what is wrong with Brendon's head.

After I looked at that site, I followed a link from there to Massachusetts General Hospital's website.  From there I found their support groups page.  I asked about craniosynostois in the chat room where someone gave me a link to the forums.  I registered as grammajoy and began to read.

From what I've read and understand from the pediatrician, Brendon's soft spot has become not soft too soon.  This is called craniosynostosis.

Cranio - having to do with the cranium (skull), and synostosis which is a fusion of one or more bones into a single bone.  Synostosis is not abnormal. In Brendon's case, his synostosis happened too soon to allow for his brain to finish growing.  Babies born with the bones fused are at the most risk for brain damage.

Brendon's CT scan appeared to show sagittal suture craniosynostosis, possible partial fusion of the coronal suture and the squamosal suture appeared to be fused.

What is a suture?

A baby's head is made up of sections, and the spaces between the sections are called sutures.  These spaces are suppose to stay open so that the brain can grow.  When the baby is 18 - 24 months old the edges of the sections start to fuse into a solid bone (the skull).

There are different ways the sutures (spaces) can fuse.  One of Brendon's is solid already, another is almost solid.  Because the skull can't expand the way it should, his forehead is bulging out more every day, and the back of his head is shaped oddly.

The sagittal suture runs from front to back and premature closing of it causes a long, narrow head shape.  Treatment involves surgically removing bone from the midline sagittal suture.  The fused sutures are released and the bones are all repositioned to allow for normal brain growth and to relieve the pressure on the eyes and brain.

The coronal sutures run across the top of the head (sort of from ear to ear).  The finding suggests that there may be partial fusion of this one, too.  The coronal suture is split in the middle by the sagittal suture running from front to back.

I took photos of Brendon's head, but the odd appearance is more of a 3-D thing and it doesn't show up very well in a picture.  From the top his head has a triangular shape, with a broad, bulging forehead which comes to a smaller width at the back of his head. From the side his head looks elongated.  From the back view, straight on, you can't really see the narrowness in a photo.

More information is at FACES: The National Craniofacial Association There are some gruesome photos on this page which show just how bad this condition can be, and we can be grateful that Brendon's case has not progressed to that point.

Here are pages of children that have already had the successful surgery:

• http://www.babylukeelijah.homestead.com/
• http://theemericks.homestead.com/CS.html - graphic photos after the surgery.

Pam's father is planning to go with her and Brendon to Los Angeles.  My first inclination is to stay home.  However the more I ponder the situation, the more I know that I'd go crazy sitting here waiting for the news.  I think I should go, too.  Pam's Mom has decided not to go.  I've been out of sorts all week waiting to find out what arrangements Pam and Todd are making for the trip.

My decision is crystalized clearly in my head.  I'm going.