Will’s Story
William Stanton DeNike was born on 3/18/09. He was 9lbs 5.5oz and delivered via C-section, since his older brother was delivered that way too. By the time he was 5 days old he showed the same signs of milk protein intolerance (crying after feedings, mucous and blood in his poop) as his brother. We immediately moved him to Neocate formula, the only one that is truly milk protein free. He responded well to the Neocate, it took his mom some time to recover from it.
At about 2.5 weeks of age he started to show the signs of having Gastroesophageal Reflux Disease (GERD or reflux), like crying during feedings and spitting up. We started him on Prevacid solutabs (7.5 mg/day). A week later we added Zantac at bedtime to help him settle at night. About a month later we increased his Prevacid dose to 15mg/day (7.5 in the am and pm), because he was have trouble sleeping. At this point he settled into eating (~30oz/day) and sleeping (~8-9 hours at night) well until he was about 4.5 months old.
At 4.5 months old he started crying during his feedings. He would burp, then cry, but I could get him to settle down and continue to eat. After a week of doing this he started refusing the bottle completely. He went from eating 30 oz per day to eating 15-18 oz per day. This set off several weeks of doctor’s appointments, tests and procedures at Children’s Hospital. (see blog posts from August 2009 for more details) After starting to thicken his formula, he began to eat more and has made it back up to around 24 oz per day. We will probably start him on solids soon, since he is 5.5 months old.
On August 20, 2009 Will was diagnosed with Ocular Albinism, or a decreased amount of pigment in his eyes. Please see vision pages for more information on this condition. A month later his diagnosis was confirmed by Dr. Avery Weiss at Seattle Children’s Hospital. In the months that have followed we have seen Dr. Weiss two more times. Will’s vision is still tracking in the normal range each time we have tested it.
November 30, 2010 Will had an OCT, Optical Coherence Tomography, test that mapped his retina. Normally OCTs are done on older kids, so we did the best we could. He has an abnormal macula and fovea, but he has both, which is good. They are as good as Jack’s. We will do more of these in the future.
Now we wait until he is 3 years old to find out what his final vision will be. Think good strong eyes.
© 2011 · the Will to see · All Rights Reserved
