What's new with TJ

Well, Taylor's coming upon a year old now, and he's been through quite a lot. This little boy has been the strongest person we've ever known. He's traveled numerous times to UCLA Medical Center for everything from pneumonia and dehydration to respiratory distress. Taylor's breathing is his biggest battle for now. He has symptoms of asthma, emphysema, bronchitis, allergies, and other various breathing conditions. Many visits have been spent at local clinics trying to pinpoint the cause of the respiratory difficulties. It has not been easy trying to set up tests and studies to get a baseline on his breathing and swallowing. We think the food he ingests may be going down the wrong pipe and ending up in his lungs. It's really hard to watch and listen because Taylor sounds like he's drowning. In order to help clear up his airway, a vacu-aide is used to suction him out, an inhaler with face mask is used to open his airway and then he lays in his little Boppy and receives treatments with his nebulizer compressor. Thank goodness he now has the respiratory equipment available for home use. Luckily he has a happy demeanor and actually enjoys the mist entering his nose and mouth.

Taylor is improving with his physical therapy and occupational therapy. The California Children Services located here locally in our city have been of great help. Taylor enjoys his time with Jennifer, Brenda and really hated to see Laura go. He also receives therapy from Pediatric Services. Taylor's mom doesn't know what she'd do without the help of the Director Julie Loe. She has been very instrumental in paving the right path for TJ and is a great inspiration for mothers. Thank you! Two members of her staff, Nancy and Leigh, provide therapy, links to doctors, families, and programs along with developmental education. Both groups stepped in at Taylor's first month of life and continue to be a part of Taylor's daily routine. Taylor has progressed at a slow rate throughout his illnesses and at eleven months of age he has reached a milestone of holding his body up on his hands and knees. A proud moment we've been reaching for. His determination to reach objects has led him to crawl in a sort of "Army" type way. What a trooper! He is one impressive boy. He displays such an ability to learn with what he has. It's amazing how he can maneuver his body, grasp with his thumb and palm of hand, and manage to hold his head up for long periods of time. All of this done with the most heartwarming smile! Taylor's next physical goal is to strengthen himself in order to be able to sit up. He has a mild case of scoliosis with a percentage of curvature to the spine and an S-shaped turn. He exercises his muscles daily to achieve this strength. Plus, he weighs only a whopping 17 pounds. He's not putting on very much weight because he's just not getting the nourishment out of his food (since its believed to be going into his lungs). A pulmonary pediatrician and GI pediatrician from Children's Hospital of Los Angeles believe that his airway during bottle feedings and baby food feedings may be the cause of food going down the wrong pipe or reflux in the throat area. And with him not being able to sit at this time the food may creeping its way into his lungs. A G-tube or tracheotomy has been voiced as solutions, but we will wait until tests have been concluded. An appointment has been scheduled for 12/1/00 for a feeding assessment and a VFSS (Modified Barium Swallow Study). Hopefully, within the next following couple of weeks he will return to Children's Hospital for a 90 minute Gastric Emptying Scan. This additional test will show where all liquid disperses in his body.

Taylor does remain taking eye drops each day to keep from going blind in either eye. This will continue until his eye surgery is schedule some time at the beginning of the year. He is also waiting to have tubes inserted in his ears because of on-going ear infections and liquid staying in his ear. This surgery is on hold too until the respiratory problem is resolved. The UCLA Craniofacial team has advised a hold on all surgeries as the respiratory problems interfere with the anesthesia involved with a surgery. All in all, Taylor's days are filled with therapy and doctor visits, and he hangs right in there. The bad side to all of this is that he's inside 99% of the time, because he's so sensitive to viruses, bacteria and any little bug that goes around. He's referred to as "our little boy in the bubble".

Each night Taylor wakes up a couple of times but usually goes right back to sleep. Gastric pain is usually the cause of his awakening. It's hard to watch him hurt while trying everything possible to relieve his suffering. During the day he is a really happy go lucky kid. He's not a consistent napper, so when he goes down to sleep – you let him sleep! He is so lucky to have his big brother Zachary. Zachary is very protective and most of the time a huge help. THANKS ZACH!!!!! We love you!!!!

Taylor's web site has received E-mails from all over the world, and some special ones from Germany, "we're thinking of you guys. Hope all is well, and the shock is over". Also, thank you's go out to everyone who's visited his web site. We apologize for not updating the web site this past summer. Updates will be posted regularly now that we are adjusting. (Sorry, Ron. Love, Bink) We will also try to keep it simple without putting too much doom and gloom. We're trying to make his journey a success!

We would like to give a REALLY special thank you to Betty Wilson (Mark's mom). Without her help I'm sure we'd both be both be a little more frazzled than we already are!!! THANKS NANA!!!!! You're definitely TJ's special angel!!! We love you soooo much!

Note* A collection of recent photos will be added a.s.a.p.! (within a week)

Previous Progress Updates

Progress 3-13-2000
Progress 4-25-2000