Thursday, November 19, 2009

We will return to Seattle Children's early January

In January, we will return to Seattle Children's with the baby. The point of this trip is to undergo a high-tech CT scan of the baby's head. Then we return to the Craniofacial unit for four appointments. We will meet the team of doctors who will operate on baby Tito. The CT scan and the four craniofacial visits will aid the surgeons in drawing up the 'surgical plan.'

Before our next trip to Seattle, the baby returns to a pediatric ophthalmologist, Dr. Snow, in Spokane in December. Dr. Snow saw the baby back in July as recommended by a geneticist. Dr. Snow found that the cafe-au-lait spots on the baby's body had spread to his right eye. These spots are being monitored because of their risk of turning into lisch nodules. The main reason for seeing Dr. Snow this time is to check on the left protruding eye. We keep drops in that eye every two hours then an ointment in at night to prevent the cornea from drying out.

Our son continues to develop into a happy, strong baby. He likes to growl, blow bubbles, chew on teething biscuits, and pull mommy's hair. Everything within reach makes it to his mouth.

Thursday, November 5, 2009

A final answer? We hope!

On Monday, November 2, we returned to Seattle Children's. Our visit was scheduled weeks earlier than anticipated. This time we had back-to-back appointments at the craniofacial clinic that took a few hours. The baby saw a pediatrician, a social worker, and a craniofacial plastic surgeon, Dr. Gruss. He walked into the room with a cohort of doctors from all parts of the world--Asia, Africa, Europe. After this team of doctors left the room, I asked the craniofacial nurse who all those doctors were. She said that Dr. Gruss usually has an entourage of doctors following him because he is well known in his field.

We think we have a final answer to what is happening with baby Tito, thanks to Dr. Gruss. This doctor has seen hundreds of similar cases in NF patients of all ages. The baby was born with a classic birth defect related to NF. There is no normal eye socket on the left side. As a result, the brain is seeping down and pushing out the eye. The sphenoid bone is disfigured (dysplastic) and bulging out of the left side of the baby's head. There is also a pocket of fluid but no tumor.


The doctor wants baby Tito to get stronger and to grow before doing surgery. Around his first birthday in the spring, the baby will have surgery in Seattle. The doctor indicated that it will be a lengthy surgery. I asked if this is serious. He said that it is not so much serious as it is specialized. It will involve himself along with a neurosurgeon. They will open the baby on top of his head in a zigzag to prevent any scarring on his face. The neurosurgeon is needed to hold the brain back and put it in its natural place while the craniofacial plastic surgeon builds an eye socket out of titanium mesh. Recovery will probably involve a short stay in ICU followed by 4-5 days in the hospital.

I look at my son and enjoy every moment I can before surgery takes place. I want to remember my son without scars. I will love my son with his scars and be there to hold him tight.