Friday, January 8, 2010

Third Trip To Seattle Children's Complete

This past week, we were back at Seattle Children's. Baby Tito had a fresh CT of the head. It was pretty cool how they put the baby to sleep. Rather than poking him several times to set an IV for drugs, they put a gas mask on him. It took only 20 seconds to put him to sleep. Granted it was tough holding the baby down while he fought the two masks, yet it beat the alternative of what happened at the hospital in Spokane with the baby's MRI and CT where we had to hold down the baby as he screamed from getting poked over and over in the dark.

After a CT in the morning at Seattle Children's, we were back in the Craniofacial Clinic all afternoon. We met with the craniofacial plastic surgeon and a neurosurgeon who will operate on the baby in the spring. Both doctors were impressive in knowledge and confidence. We have hope that they can help the baby. It appears the baby was born with a portion of his sphenoid bone missing on the left side of the head behind the eye. The cavity has filled with the brain and a large pocket of fluid. The goal of the surgery is to rid the brain of this fluid. The other task is to create a barrier between the brain and the eye socket with titanium mesh. This will allow the left eye to recess back into the face where it belongs.

So what are the next steps? We are scheduled back at Seattle Children's soon. The neurosurgeon has ordered an MRI of the baby's spine to check for spinal tumors associated with NF 1. If any tumors are present, then this complication will more than likely
change the surgical plan.

Miracles and blessings abound. Once again, we feel everyone's support and love. We take each step as it comes, knowing that God is faithful and steadfast in love. We have experienced God's love through you. Thanks also to our church's recent fundraiser. Holy Trinity Lutheran Church raised over $1,500 at a spaghetti feed. Part of this money came from a match by Thrivent Financial. The MOPS group at Lace's parent's church, Hayden Lake Friends Church, has given $750. Thanks to the many other individuals who have given monetary gifts for our baby's medical expenses. The other good news is that for the next year, Seattle Children's Hospital is waving our 20% owed after insurance!

Saturday, January 2, 2010

Eye Trouble

A recent trip to the baby's ophthalmologist revealed laziness starting in the left protruding eye. The condition is called amblyopia. We have to patch the good eye now every day until the baby's surgery in the spring. This is to prevent vision loss. Thank goodness the patching sessions are only 30 minutes. It is nearly impossible to keep the baby from rubbing the eye patches off. All kinds of funky stickers are available to decorate the patches.

After the brain and eye-socket/skull surgery in the spring, the baby may have to have a secondary surgery on the eye muscles of the left eye. These muscles are atrophying. The baby can no longer look up with the left eye.

Soon we will be back at Seattle Children's. The purpose of this third visit is to get a fresh CT scan of the brain. Then we will meet the surgical team and draw up the surgical plan.

The baby continues to grow happy and strong. What a delight our son is.