In our house, fall means changing leaves, homemade Halloween costumes, and a little nail-biting fear. Respiratory season is upon us, and that always adds an element of dread for families of kids who are medically complex.
At two months old, my son Richie received his trach, and he was ventilator dependent until he was 18 months old. Gradually, he was able to tolerate a speaking valve and capping, all working toward decannulation. It seemed to us that things would be easier once he no longer had a trach, but it isn’t quite that simple. Continue reading
Because Richie has a significant speech delay, there are many times when he is unable to tell us the source of his frustrations. Over the years, and through several modalities, we have tried to give him tools to communicate his needs. Continue reading
The following was published as part of my “Teachable Moments” blog series for ProMedica HealthConnect. Research shows that among parents of children with special needs, the divorce rate is 80 percent, compared to 50 percent among the rest of the population. The challenges of raising a child with special needs, along with the typical demands … Continue reading
This article was published in Complex Child e-magazine. Slow-twitch muscles fibers give us endurance, while fast-twitch fibers provide strength and power. Most of us have about the same amount of each type of muscle fiber. When he was two months old, my son Richie had a muscle biopsy that revealed an abundance of slow-twitch fibers, which … Continue reading
For those of us whose children require in-home nursing, agencies are often the first resource suggested to us by hospital personnel and discharge nurses. Because they have access to multiple nurses, agencies can often respond to the need for care quickly. Many hospitals suggest that families use agencies instead of independent nurses because they assume … Continue reading
When we met 1275 days ago, it was on one of the worst days of my life. Continue reading