We started turning the distractors today.  We will turn them every day twice a day for 21 days.  Each full turn moves the distractors 1/2mm.  Isaac did not even flinch or react to Zane turning them this morning.

Isaac has been doing great!  He has been playing with his toys and talking, although he mostly says, “dada, dada, dada”.  We have been able to take him for walks inside the hospital.  Joseph and Sarah have been visiting this past week and were able to come and visit us on their way out of town yesterday.  The hospital is still under visitation restrictions, so no one under 13 is allowed on the patient floors of the hospital, but since we were able to take Isaac out the girls were able to see him.  Here are pictures from our walk yesterday.  He fell asleep while we were out!

He had X-rays taken yesterday to check the placement of the distractors.  Zane carried him down to radiology for those. I took pictures of the X-rays.  You can see the plates and you can also see the line where they cut his skull.

Isaac received a cape from Tiny Superheroes, a tiny cape company who seek to empower kids who exemplify strength & determination as they overcome illness or disability.  I still need to get a picture of him wearing it, but here he is in the hospital crib playing.  We also had some friends stop by, who we met in December who have a daughter with Apert Syndrome, and they brought him a sign with his name on it.

He won’t take a pacifier, but he loves his bottles.

Isaac had his first surgery yesterday and he did great.  He had a Posterior Cranial Vault Distraction. During surgery they make a cut in the posterior part of the skull and adhere plates and distractors rods.  We will turn the rods daily for 21 days, which will push back his skull and allow for bone formation in between the bone segments.  The reason for this is to expand his cranial vault and give his brain room for growth.

Here is a picture of an infant skull model with the plates and distractors rods.  Isaac’s plates and rods are not in the same location as these.

Here are two pictures of Isaac’s first CT Scan from last September.  You can see that his coronal suture is fused.

His surgery went well!  Everything went as planned.  His ENT was also in the OR to do a sleep study scope, to see why Isaac’s oxygen drops when he is asleep, a Bronchoscopy, a Laryngoscopy, and to check his ears for fluid.  The outcome of all the scopes was that Isaac’s walls in his throat collapse while he is sleeping, so we will be starting CPAP at night.  Isaac had fluid in both ears, so the ENT placed ear tubes in both ears.

Here he is in recovery.  He was pale, I know hard to imagine our kids any whiter, his eyes were a bit swollen and he was very sleepy.

And here is a picture after we moved up to his room.  He did not have to spend the night in the PICU!

Isaac is a strong boy and a fighter!  We are so very proud of this little boy!