Holidays
Commentary
When I think about medical equipment like pulse oximeters, the little machines that measure heart rate and how much oxygen is in the blood, the last thing that comes to mind is an emotion like love. These are machines, after all, and machines are by definition cold and devoid of emotion. The only emotions most people associate with a pulse oximeter are anxiety (is my kid OK?) and sadness (why does my kid have to be on this constantly alarming monitor?).
But it turns out that a pulse oximeter can actually quantify love. I know it sounds crazy, but it is completely true, and I am not the first to notice it.
This Month's Focus: Holidays
Claiming Your Holiday Cheer
by Shannon Gonsalves
For many people, the
thought of the holidays approaching provides another source of
anxiety. This can be especially true for families with children who
have complex needs. How will my child handle the chaos of a family
gathering? Will he eat some of the holiday dinner? Please, God, let
him have one day without pain. Will I be able to find a toy that will
be appropriate and work for my child's needs? How can I afford my
child's medical bills and presents, too?
These thoughts, questions, and prayers are common ones for families with children who have complex needs. It adds another layer of difficulty to an already stressful time of the year. Sometimes, just watching other kids who are typically developing can be a bitter pill to swallow.
Can anything be done? Some of this stress can't be avoided, but how we handle it can make a huge difference in how much enjoyment we get out of the holidays.
Read More -->These thoughts, questions, and prayers are common ones for families with children who have complex needs. It adds another layer of difficulty to an already stressful time of the year. Sometimes, just watching other kids who are typically developing can be a bitter pill to swallow.
Can anything be done? Some of this stress can't be avoided, but how we handle it can make a huge difference in how much enjoyment we get out of the holidays.
Christmas on the Wards
by Keely Schellenberg
Being in the hospital any time is difficult for children and their families. Being in the hospital over the holidays just compounds the difficulty for everyone involved. With an unexpected admission, holiday plans can be derailed, family visits and vacations can be cancelled, and special traditions can grind to a halt. All of this is extremely hard, not just on the child in the hospital, but also on the entire family, who find themselves forced to reinvent the holiday.
There are, however, ways to brighten things up during this time, even when your child is too sick to participate much at all.
Read More -->by Keely Schellenberg
Being in the hospital any time is difficult for children and their families. Being in the hospital over the holidays just compounds the difficulty for everyone involved. With an unexpected admission, holiday plans can be derailed, family visits and vacations can be cancelled, and special traditions can grind to a halt. All of this is extremely hard, not just on the child in the hospital, but also on the entire family, who find themselves forced to reinvent the holiday.
There are, however, ways to brighten things up during this time, even when your child is too sick to participate much at all.
Choosing Clothing for Children with Special Needs
I can't even remember how many clothing items I've received as holiday or birthday gifts that I've donated to charity because my daughter simply cannot wear them. Because my daughter cannot play with most toys, a lot of friends and relatives seem to think clothing is a good choice for a gift. What they don't realize is that some items of clothing are next to impossible to get on her due to her muscle tone, while others interfere with her medical equipment.
My intent is to set forth a few guidelines for family and friends to help them choose appropriate clothing for children with high or low muscle tone, or who have motor impairments or medical equipment that makes dressing difficult. Of course, each child has unique needs, but hopefully the following general principles will be helpful in guiding purchases.
Read More -->I can't even remember how many clothing items I've received as holiday or birthday gifts that I've donated to charity because my daughter simply cannot wear them. Because my daughter cannot play with most toys, a lot of friends and relatives seem to think clothing is a good choice for a gift. What they don't realize is that some items of clothing are next to impossible to get on her due to her muscle tone, while others interfere with her medical equipment.
My intent is to set forth a few guidelines for family and friends to help them choose appropriate clothing for children with high or low muscle tone, or who have motor impairments or medical equipment that makes dressing difficult. Of course, each child has unique needs, but hopefully the following general principles will be helpful in guiding purchases.
Specialty Article
Respiratory
Breathing Easier: Airway Clearance Using High-Frequency Chest Wall Oscillation
Children with a wide variety of medical conditions may have difficulty breathing due to pooled secretions in their airways or an inability to produce an effective cough. These children, who have conditions including cystic fibrosis, muscular dystrophy, spinal muscular atrophy, mitochondrial diseases, or cerebral palsy, often require intensive interventions to help them breathe.
One intervention, an airway clearance system that oscillates or vibrates the chest wall, can be extremely effective for loosening up pooled secretions in the lungs and upper airway, clearing the lungs and allowing a child to breathe much more easily.
Breathing Easier: Airway Clearance Using High-Frequency Chest Wall Oscillation
Children with a wide variety of medical conditions may have difficulty breathing due to pooled secretions in their airways or an inability to produce an effective cough. These children, who have conditions including cystic fibrosis, muscular dystrophy, spinal muscular atrophy, mitochondrial diseases, or cerebral palsy, often require intensive interventions to help them breathe.
One intervention, an airway clearance system that oscillates or vibrates the chest wall, can be extremely effective for loosening up pooled secretions in the lungs and upper airway, clearing the lungs and allowing a child to breathe much more easily.
Feature
Taking Care of You, Part II: Keeping Yourself Healthy, Physically and Emotionally
by Shannon Gonsalves
Last month we presented some general strategies for taking care of you, focusing specifically on the benefits of massage therapy. This month we turn to your physical and emotional health. Remember the analogy from Part I: when the oxygen masks drop on the airplane, put yours on first before assisting others. You need to keep yourself physically and emotionally healthy in order to care for your family.