What's new with TJ

* Taylor was admitted to the hospital for seven days because his two-week cold was getting worse. He was constantly coughing, had difficulting breathing, was wheezing, and had rapid breathing. His symptoms were very frightening as he couldn't hold any liquids down and was constantly vomiting. The hospital diagnosed his cold as RSV (Respiratory Syncytial Virus, an infection of the lungs that can make some babies very sick. It's a contagious virus that can be very serious and may cause death. RSV can cause health problems that can last a lifetime. These problems may include asthma and diseases that sometimes make it hard to breathe.) Taylor's family needs to make sure they are very careful to avoid giving RSV to Taylor in the future, especially before his first surgery. Taylor's daily homecare now involves three types of oral inhalations, which are Albulerol, Atrovent, and Flovent. The first two open his airways for the third to help rid the virus.

* On 3/2/00, Taylor was seen by a local Pediatric Opthalmologist who will be treating his eye problems. Taylor has mild Astigmatism, farsightedness, and Exotropia (outward drifting eye common in Apert Syndrome). In order to prevent Amblyopia (lazy eye) in Taylor, one drop of Cyclogyl is used each day alternating eyes.

* Mark and Cynthia traveled with Taylor to UCLA and Santa Monica on 3/10/00 for blood donation and the preoperative visit appointment. Two units of blood were drawn from Mark at the UCLA Blood donation Center and will be given to Taylor during his first surgery scheduled for 3/30/00. The Reconstructive surgeon and scrub nurse discussed the procedure, the estimated recovery, laboratory work, cardiac status prior to surgery, along with photographs taken in order to follow his progress. Taylor's first skull surgery will be the release of the coronal sutures to make space for the brain, to move forehead and face forward, to pull in the sides of the face, and squash down the top of the skull. Dissolvable plates and screws will be used, described as similar to a child's Erector set. This dissolving will take a couple of weeks. The surgeon said this is new technology (four years old). Mark and Cynthia were very pleased with the visit because no staples or halo will be involved in the procedure or recovery. Taylor was a real happy camper the entire day especially during the long car trip.

* Taylor's pediatrician will see him a couple days prior to surgery for a history and physical examination.

* On 4/5/00, Mark, Cynthia, and Taylor will return to the UCLA Craniofacial Clinic for a two month team re-evaluation. Taylor will be at the point of discharge from recovery in order to attend this meeting in UCLA clinic across the street.