Zayden has had a challenging few weeks. He fell ill on his birthday, which delayed his 1-year vaccinations by an additional two weeks. What was initially planned as his one-year checkup turned into a sick visit instead. After running a culture, the doctor discovered that Zayden had three bacterial infections. This led to a thorough sterilization of our entire home, including replacing all of Zayden's medical equipment such as lines, hoses, and other components. We also increased the frequency of his breathing treatments, meticulously cleaning all equipment with a vinegar and distilled water solution, followed by a rinse in distilled water after each use.
Over the past two weeks, Zayden has shown steady improvement. He’s become more engaged with his toys and is showing a brighter, more playful attitude. While he still has cranky moments, he often charms us with his “look at me, I’m such an angel (with a little mischief)” expressions. His head control is progressing remarkably well, improving week by week. He can now tolerate standing at a full 90-degree angle in his stander for nearly 30 minutes, twice a day, with only minimal head support needed. Zayden has even started wiggling around in his bed, demonstrating fantastic progress in his core and leg strength. Tomorrow, he has appointments with both his endocrinologist and pediatrician.
The rest of the month holds some exciting milestones for Zayden. Toward the end of the month, he will undergo a sleep study to evaluate how he manages being off and on the ventilator while sleeping. This is an important step toward capping his trach and eventually weaning him off the ventilator entirely. The following week, Zayden is scheduled for surgery to have tubes placed in his ears, assess the “E” tubes that allow drainage from his ears to his throat, and examine his trach. The surgeon will determine whether he needs a larger trach or if there is any damage from the initial tracheotomy performed in West Virginia.
Zayden is still on a no-oral-intake diet, which is frustrating, but we know this will change in time. That hasn’t stopped him from putting his hands, toys, or blankets in his mouth whenever he gets the chance! He continues to grow at an impressive rate. At his last weigh-in, he was 22.9 pounds and measured 33 1/4 inches long. He’s already wearing 24-month clothing due to his height and is in size 5 diapers. Every day, Zayden amazes not only his doctors but also his occupational, physical, and developmental therapists—and, of course, us. He is truly an incredible little boy.
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