The couple’s 5-month-old son, Maverick, was down the hallway fighting for his life, and the doctors explained there was nothing they could do to help him. Higgs wept, but Chenkus felt like she’d cried enough in the past five months for a lifetime. Maverick was born with a severe heart defect, and even after two surgeries was in heart failure. She felt the real reason the doctors were denying their baby a life-saving transplant was that children with Maverick’s genetic condition grow up to have disabilities. What happened next is the subject of a federal investigation and has pitted a family against the very doctors who were supposed to save their baby’s life. There are few hard and fast rules to guide doctors as they select who will get a transplant, effectively selecting who will live and who will die. In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart. These decisions are, to some extent, subjective, as doctors sometimes disagree with each other about who should get an organ. He points to the case of Amelia Rivera, a New Jersey girl with disabilities who was denied a kidney transplant last year, and to a survey he conducted in 2008 showing that more than four out of 10 pediatric transplant centers say they always or usually consider a child’s neurodevelopmental delays when making a transplant decision, even though studies have found children with these delays fare just as well medically after a transplant as other children. In the past when transplant doctors rejected patients with disabilities, they were often explicit about why.
Karen Corby said doctors have given her one reason after another for refusing to give a transplant to her son, Paul, 24, who has autism, and she doesn’t believe any of them. Corby, who reached out to three hospitals for a heart transplant for her son, said doctors have told her Paul wouldn’t be able to manage the complicated drug regimen after his transplant.
She was also told transplant medications could have potentially harmful interactions with Paul’s psychiatric medications. Doctors also said they worried Paul might not be able to let anyone know if he felt sick after the transplant.
Transplant doctors said they don’t discriminate against people with disabilities, but that disabilities need to be considered when making transplant decisions.
Early in her pregnancy, Chenkus and her boyfriend, Higgs, sat on the floor of a Barnes and Noble store poring through baby name books, unable to agree on a boy name. But after a while, she warmed up to the unusual name and it was settled: Maverick Banks Higgs, his middle name for the street in the rural South Carolina town where Chenkus, now a hairstylist, and Higgs, now a lawyer, met when they were 12 years old. At an ultrasound a few months later, Chenkus was grateful they had chosen a fighting name for their son. Maverick’s parents chose the surgeries and met with doctors at New York-Presbyterian Hospital in Manhattan. After Maverick was diagnosed with a rare genetic disorder, the doctors said he wasn’t a candidate for a transplant.
As Maverick’s condition worsened, doctors decided to perform a second surgery several months ahead of schedule. On March 20, the doctors called Maverick’s parents into a hospital conference room and told them they had just received the results of a genetic test showing Maverick had Coffin-Siris syndrome.
According to a recent study, babies with Coffin-Siris sit, walk, and speak later than other children on average. Two days later, the doctors convened another meeting and said Maverick was no longer a candidate for a transplant. On May 18, Maverick was transferred from New York-Presbyterian to Boston Children’s Hospital. The doctors gave Maverick’s parents information about Coffin-Siris, which cited a study by Dr.
CNN interviewed Santen and five other experts on Coffin-Siris, who explained that while some children with the syndrome have been reported to have frequent infections, that’s not uncommon among children in general, even in ones without genetic disorders. The six Coffin-Siris experts said children with the syndrome do not have suppressed immune systems or increased risk of infection or tumors and that in their opinion, Coffin-Siris isn’t a valid reason to deny a patient a transplant. Dismayed, Chenkus asked Santen to reach out to Maverick’s geneticist in New York directly. On April 12, Chenkus called for another meeting with Maverick’s doctors, thinking she might have one more chance at getting her baby a new heart. She repeated what she’d learned from the Coffin-Siris experts, and asked them a question.
She said the doctors didn’t answer her question, said they had another meeting to attend and walked out the door.
Chenkus and Higgs realized they didn’t have a chance of getting Maverick a transplant at New York-Presbyterian. But Chenkus said when she got on the phone with the Philadelphia doctor, he told a different story.
Two hospitals had now refused to give Maverick a new heart for completely different reasons, neither of which made sense to Maverick’s parents. In addition, Boyle noted that Maverick had a gastronomy tube in his stomach for his feedings, considered a risk for infection, and they could close the tube, but then they would have to replace it after the transplant. Angie Kiska, a spokeswoman for the Cleveland Clinic, declined to comment for this story because Maverick was never a patient there.
On May 18, Maverick was taken by ambulance from New York to Boston, where for the next three weeks doctors tinkered with his medications. Maverick, who had been lethargic and sleeping 18 hours a day toward the end of his hospital stay in New York, became more lively.
They added that Maverick might need a heart transplant in the future, and if he did, his Coffin-Siris syndrome wouldn’t stand in the way. After fighting for her child for so many months, Chenkus put her head down on the table and cried. He turned 1 on September 29, can sit up by himself and can stand and jump if someone holds his hands.
Like other children his age, he’s a social baby, interacting with those around him, and he shows particular affection for his parents and others who are close to him. Chenkus said she thinks the Boston doctors figured out a way to get her baby out of heart failure simply because they were willing to put forth the effort, even though he’ll likely have disabilities. Today, Maverick’s mother starts to cry when she looks at her son and remembers how seven months ago his doctors said he had had about six months to live. Adults aren’t the only ones who suffer from high cholesterol, they just get checked more often than kids. A cup of hot cocoa (at least 70 percent pure cocoa) promotes oral health and helps to protect delicate skin from sun damage over time.
These orange tubers are high in Vitamin A which helps kids develop healthy vision and eyes.
Flaxseed is bursting with Omega-3 fatty acids that little guys need to grow their brains to their full potential. Get the kids moving with these fun games — they won’t even realize they are getting exercise!
Gather a few stuffed animals, crank up some tunes, and boogie until one observer (Mom or Dad) pauses the music.
Have each player toss a beach ball into the air and try to touch his nose or high-five the other players before the balls drop. Have your child gather sheets of construction paper or a stack of mismatched hand towels and lay them down in a path all through the house. Lay down a straight or zigzagging line of tape from the kitchen snack cupboard to the dining table. Get ready for spring with this fun stretch: Ask your child to curl up on the floor as tightly as she can, pretending to be a small seed. Dump a pile of cotton balls on the floor in your child’s bedroom and place an empty bowl on the floor in another room.
Candy-colored guns are part of an effort on the part of gun manufacturers to make pistols more attractive to women. A 3-year-old boy in Greenville, South Carolina was shot in the head and killed on Friday after he started playing with a pink handgun because he thought it was a toy. Police responding to the shooting at Haywood Plantation Apartments said that Tmorej Smith was found with a gunshot wound to the head, according to The Associated Press.
Investigators determined that Tmorej and his 7-year-old sister had been playing with a pink handgun when the incident occurred. Fowler said that the shooting happened in a bedroom, while the boy’s grandparents were in the living room. Pink handguns and Hello Kitty assault rifles have been part of an effort to get firearms in the hands of women and younger groups in recent years. These little, doable ideas for romance and romantic things to do will spice up your sex life. There’s nothing that creates a world-of-two feeling more than your own private language.
Break up the monotony of logistics-centered texts about what’s for dinner by sending a no-reason, just-because-I-love-you text. The next time you’re steaming over his dirty socks on the floor, take a moment to replay a happy time you shared together, a la guided meditation in yoga class. Sometimes it’s simply that she started talking early, or that she wrote her name when others her age could barely wield a crayon.
Last fall, when Steve Jobs, the renowned head of Apple and the brains behind the most prized of digital tools, passed away, pundits around the world sought to define exactly what made him so brilliant.
Standardized tests given in public elementary schools measure how much of the state-mandated subject matter taught up to that point has been learned.
Even Lawlis admits that an IQ score in the highest range is limited in how much it can predict about future success. Talk, talk, talk Ask your kid open-ended questions, like “What would happen if we stopped for ice cream on the way to the beach?” Such questions help a child reflect on what he knows and tell him his opinion matters. Read, read, read Research has repeatedly shown that access to books and one-on-one reading time is a predictor of school success.
Praise results Stick-to-itiveness is a quality that will endear your childs teachers—and employers.
Seize teachable moments You can help your child sharpen school skills as you go about your day. Use the form below to delete this Child Care Authorization Form Letter With Sample image from our index. Use the form below to delete this Explanation For Child Care Facilities Emergency Planning Guide image from our index. Use the form below to delete this Childs Care And Emergency Contact Information Form By TinyTracker $3 image from our index.


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Use the form below to delete this NYCa€™s Best Options For Emergency Child Care A« CBS New York image from our index. In Orlando, Florida quality daycare providers will have written emergency fire procedures that are practiced periodically and perhaps even on a monthly basis. In Orange County, we have 42 listed Fire Stations that are trained and equipped to help you plan and produce an emergency exit plan for your home.
Emergencies can happen unexpectedly in communities just like ours, to people just like you.
During and following an emergency police, fire and rescue personnel may not always be able to reach you quickly, such as if trees and power lines are down or if they’re overwhelmed by demand. Be prepared…following a disaster or large scale emergency you may be on your own and need to take care of yourself and your family.   Emergency responders and relief personnel will come but it may take hours, possibly days, for them to reach everyone! Local, state and federal emergency officials repeatedly stress the following – you should have a disaster supply kit, which is a collection of basic items your household may need in the event of an emergency.  Your kit should include at least a 72-hour supply of non-perishable food, water, and supplies, including medications, for each person and animal in your home. Also, since you do not know where you will be when an emergency occurs, you should also prepare a kit for your work and car.
One of the most important things you can do for yourself and your family is plan!  Please consider this…we don’t control when disasters strike.  Your family may not be together…It may be dark and your family is sleeping…It may be while you are at work and children are in school, daycare, etc.
What will you do?   Where will you go?    How will you reunite if you and your family are separated? As much as possible, involve all family members in the planning process.  Once the family emergency plan is complete – be sure to give a copy to all family members AND practice your plan!
Keep in mind…developing and practicing an emergency plan will: 1) improve your family’s confidence in their ability to handle an emergency, and 2) help them be better prepared if you’re separated when an emergency occurs.
Knowing what to do before, during and after an emergency is a critical part of being prepared and may make all the difference when seconds count.  Protect yourself and your families… remain updated on incidents and warnings affecting our community. Reverse 911  Lehigh County provides its residents and visitors with Reverse 911 community notifications in the event of emergency situations or during other situations that may warrant community notification, such as during major or prolonged weather events.
Reverse 911 Notifications are provided via a telephone notification system that will dial each telephone number in the system within the affected area and provide the person who answers with any pertinent information regarding the emergency. Those who have landline telephone service provided by VOIP services, such as Vonage, Magic Jack, and other companies need to register their home telephone number in order to receive alerts from our system. PLEASE NOTE that during times of widespread emergency situations, cellular telephone networks may be overloaded and messages may not be sent by the wireless carriers in a timely manner. Major disasters can overwhelm first responder agencies.  The whole community can participate in programs and activities to make their families, homes and communities safer from risks and threats. CERT is about “Neighbors Helping Neighbors” in your own neighborhood during an emergency.  Following a disaster, these citizen-responders use their training as part of their neighborhood team to help others when professional responders are overwhelmed or not immediately available.
CERT training is a program that educates citizens about the hazards they face in their community and trains them in lifesaving skills.   Following a disaster, these citizen-responders use their training as part of their neighborhood team to help others when professional responders are overwhelmed or not immediately available.
If a disaster struck our community and it caused emergency responders to be delayed, what would you do?
If you would help your neighbors until the emergency responders arrived then the time to get involved is now…Join the Upper Macungie CERT!
She was like a rock now, and after the meeting with the doctors she went directly back to her son’s room without shedding a tear. Not one of the studies she read mentioned anything about an increased risk for tumors or infections. Last year in the United States, 321 people, including 19 infants, lost their lives while waiting for a new heart. We want hearts to go to people who we think will benefit the most from them,” said Dr. Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled. Karen replied that her son, who graduated from high school and has taught himself to program computers in several languages, is completely verbal and had alerted her a few years earlier to subtle symptoms that ended up being a stroke.
He had his first surgery when he was 4 days old at Morgan Stanley Children’s Hospital, a part of the New York-Presbyterian system.
Chenkus said the doctors went into detail about how because of this syndrome Maverick would grow up to have intellectual disabilities and developmental delays. They have cognitive delays ranging from mild to severe and are often small for their age and have difficulty feeding, vision problems, and other issues. According to Chenkus, they said children with Coffin-Siris have compromised immune systems and are at a high risk for tumors and infections.
Linda Addonizio, medical director of Presbyterian’s pediatric cardiac transplant program. She said during the meeting the doctors offered no hope at all for Maverick, telling his parents to love him for the time he had left. They insisted they would not give Maverick a transplant, emphasizing that he had a compromised immune system.
Maverick was now 6 months old and had spent nearly his entire life in the hospital, a well-known source for germs, and he’d had multiple invasive procedures that would have given those germs a good opportunity to invade his body. According to her, he said Maverick’s genetic problems played very little role in their decision making. CHOP is deeply committed to providing the best possible medical care to all children, including those with any form of disability,” according to the statement.
They continued to feel that their son’s disability was the real reason for the denials, and they felt powerless to do anything about it.
Gerard Boyle, medical director of pediatric heart failure and transplant services at the Cleveland Clinic, saying his hospital wouldn’t give Maverick a transplant, either. He e-mailed Chenkus a study saying one year after transplant, 70% of babies like Maverick were still alive, compared to the most successful group of babies, who had an 89% survival rate. He responded quickly: His blood pressure, once sky high, went down more than 30 points and the level of oxygen in his blood, once dangerously low, rose dramatically. He gained a pound in one month in Boston, after gaining no weight in his last three months in New York. Once again, a group of physicians in white coats gathered around a conference table and turned to face Chenkus and Higgs. Presbyterian Hospital spokeswoman Christina Stolfo declined to respond specifically to the complaint, and referred us back to the hospital’s previous statement. We later learned that this was false information and that Maverick is not at a heightened risk for tumors or infection,” Higgs wrote in the complaint. Studies revealed that kids who start their day with oatmeal concentrate better in school all day. This tasty spice regulates blood sugar, which will keep your kids’ energy from crashing after breakfast in the middle of a school day. Black beans help kids keep cholesterol levels down and provide plenty of calcium and protein to boot. You can also sprinkle cocoa powder on fruit, snacks and desserts for a healthy punch of flavor. Kids need a daily diet with roughly 30% monosaturated fat and a little avocado a day provides more than enough. Salmon has the protein kids need to grow and lots of Omega-3 fatty acids to promote the development of healthy brains and strong hearts. They’re best cooked and paired with olive oil in pasta sauce or other kid-friendly dishes. It protects their breast tissue and deters the growth of cancer cells and other abnormalities well into adulthood. They contain Vitamin D for better calcium absorption and lots of protein to keep little ones full and focused until snack time. It has the right combination of complex carbohydrates and proteins to keep kids happy, energized and full until its time for dinner. And they’re delicious roasted, mashed, baked or covered in marshmallows and brown sugar.
Take turns choosing a slip and acting out the animal (try it with no sounds for a real challenge) until someone guesses correctly. Place a big bowl on the table, and tell your child she can use it to mix up her own custom trail mix.
Have her imagine the warm sunshine, letting her body slowly unfurl and reach toward the sky.
Set a timer for four minutes, and have your child move all the cotton balls from his room into the bowl — using a spoon and crawling on hands and knees. Take a cue from the Village People and show your kids how to form letters with their bodies.
When everyone’s outfitted, assemble the kids in the garage or a room with lots of open space. Have the players stand in the doorway and take aim, trying to get their sock into the bowl.
Innocent and sweet, it will remind you of that time long ago when just that was enough to get your heart racing.


So whip out the candles and share a meal in their soft glow, even if it’s leftovers in front of the TV. Sometimes it’s hard to find time to say goodbye to each other, much less something really heartfelt.
Keep a list of all the little reasons you love him — and share it with him periodically.
Sometimes the person who’s closest to you gets the short end of the stick as far as courtesy. Set the alarm for 15 minutes earlier than usual and use that time for a morning quickie or just to cuddle. But few of us are immune to the competitiveness that seems to have gripped every playground and preschool birthday party in America.
The answers they often came up with seemed grayer than the computer boxes Jobs so magically transformed. We as a culture are so busy making kids feel good that we’ve lost sight of the time it takes for them to actually become good, says Rhee. Studies have shown that young children often are uneffected by the sounds of local smoke detectors in the home. The most important thing you can do is be able to take care of yourself and those in your care. Pennsylvania uses AlertPA to provide citizens and partners with timely information to assist them in making informed decisions.
These notifications are meant to provide information that is critical to the safety and well being of the county’s residents and visitors. If you are not sure whether your telephone service is VOIP, contact your telephone provider for confirmation.
Wireless telephone numbers are not automatically included in the Lehigh County Reverse 911 system and must be registered by the phone’s owner.
In a chair next to his hospital crib, she opened her laptop and hoped the Internet might have clues for how to keep her baby alive.
Right now, some 3,500 people await a heart transplant, and the situation is only getting more desperate as the waiting list grows but the number of donors remains about the same. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.
Fewer than 100 cases of Coffin-Siris have been reported worldwide, according to the report.
After the transplant, he would have to take drugs to suppress his immune system even further, making the transplant too risky, they said.
Maverick’s mother e-mailed Santen and asked if it was true that children with Coffin-Siris have compromised immune systems.
If he had a compromised immune system, why had he never had a single infection, not even a case of the sniffles? For some patients, transplantation simply serves to replace one serious medical situation with another,” the statement continued.
That is no coincidence as we are all a small community of pediatric transplant specialist (sic) and are all aware of the current data and literature,” he added. That’s why we are here to offer you  six ethical values that everyone can agree on — values that are not political, religious, or culturally biased.
That’s because oatmeal breaks down slowly to give continual bursts of energy over a long period of time. A fruit plate with a variety of colors provides kids with essential vitamins and minerals they need to grow and fiber to keep colons healthy.
You’ve heard people screaming about it everywhere, but do they have to come up with safe, easy ways for children to get their hearts pumping and muscles working? Once she’s done, the challenge is on: Can she walk from one room to the next by stepping only on certain colors?
He can balance some beanbags on his belly and move across a marked finish line, or gather some wayward toys and move them to his room.
Repeat the cycle, getting faster each time until the little flower blooms so quickly that your child jumps into the air. Have them work together to create letters or form their names or short words, either in a standing position or lying flat on the ground. Lori Klein (R) was criticized after she pointed her loaded raspberry-pink handgun at a reporter. Good news: you can still fit a little romance into your daily routine (and remember, the small stuff adds up). Pop open a bottle of champagne to make a fuss over the little accomplishments, instead of waiting for the biggies. Taking a walk down memory lane can help jolt things into perspective and remind why you love him so darn much, smelly socks and all. Pick up a book he’d like, buy and load a new song onto his iPod or simply pick up his favorite candy at the supermarket checkout for no other reason that you know it will put a smile on his face.
Foreign languages are the new ABC’s, kindergarten is the new second grade, 90 is the new 80. Our children’s performance lags behind as we watch countries like Finland, Singapore, and South Korea churn out the next generation of math and science whizzes, the very skills our new digitally driven landscape requires. However you perceive intelligence, the assumption about those who possess it is that they will ace not only tests but life. Read on to find out how you can develop the genius in your child, from her performance in school to how a trip to the store can be a chance to build vocabulary, math skills, and money smarts. Even the well-known international high-IQ society Mensa’s stringent testing identifies not “geniuses” but, rather, people whose ability and creativity put them in the top 2 percent of the population. Instead of saying “Hey, a windmill!” ask a question: “What do you think they do?” Encouraging observation of details will help your child do the same in class, says Rosales.
Teachers are instructed to discuss emergency preparedness with the children on a regular basis.
In the event that your children are sleeping when a local smoke detector is triggered – they may not hear the alarm at all.
The complaint charges Maverick’s civil rights were violated and that he was discriminated against based on his disability. Use the points below to help young people understand the Six Pillars, and use the mnemonic devices at the bottom to help them remember. Introduce your kids to a daily fruit plate at a young age and they will probably continue the habit into adulthood. Clearly not, or they wouldn’t be making us moms feel so guilty for supposedly raising a generation of couch potatoes.
Then see if they can stay linked while walking around and trying to pick up items from the floor. They’ll race, carrying the potato between their knees, to see who can drop it into the jar first, no hands allowed. A more common—and politically correct—term in the world of education is “gifted.” Many schools have a “gifted and talented” program, but how many kids actually belong in them? He may not understand them, but he will figure it out if the words are used multiple times in context. But judging by the trophies and ribbons that line their room, you’d think I had the next Mia Hamms here,” she notes. And a trip to the store can be a chance to build vocabulary, math skills, and money smarts. They should discuss how the fire and all other drills will  run, what they will hear during and after the drill, as well as what they are expected to do during and after the drill. A good reminder is to make certain that they are checked along with the time change, in the both the spring and the fall. It is recommended that if you have a monitored security system, that you take advantage of home fire alarm monitoring and add monitored smoke detectors to your package.
Blow up a balloon, set up the sofa or a chair as the center line, and have your child run back and forth to hit the balloon before it lands on the ground. As long as you have enough beach balls or balloons, you can play this with any number of kids. If racers (walking, hopping, running, falling down laughing) drop the potato, they must go back to the starting line. Read on for 15 ways to make romance a daily habit — and use our send-to-a-friend link to fill him in too!
Yet many experts say both types of tests can be poor indicators of a child’s true ability. Other experts agree that, if anything, environment (read: parental influence) has the edge. John Shotter, a dad in Seaford, NY, makes it a top priority to talk to his son, Jack, 2, through daily activities.
Daycare emergency drills should be carried out on both an informed and a surprise basis, to ensure that everyone is adequately prepared.
In the event that smoke is detected in your home, the burglary alarm sirens will sound, and the fire department will be dispatched by the central station. Knowing that the fire department is on the way while you gather your children and pets is priceless.
Maybe the room is too hot or the kid next to him is fidgeting and distracting him?” notes Vivian Kirkfield, former Head Start and kindergarten teacher and author of Show Me How!
The extra time you didn’t have to take to dispatch fire alarm response yourself could help to save one extra life.
So to be able to share his interests with his son, Erik, when he was in elementary school, he occasionally pulled him out of school to visit a museum. Standardized tests are just one gauge of student achievement and should never be used as the lone measure, adds Dennis Van Roekel, National Education Association president.
Sarah Brown, a preschool teacher in Hollywood, MD, had her 2-year-old students paint with apples, bananas, and then skinny carrots. Some parents also enlist the help of child psychologists to determine giftedness, often through IQ testing. When her students advanced to the 4-year-old group, the teacher noticed that they had better prewriting skills than the new students.
We all know—parents and teachers—that our children are much more than a test score.” In other words, tests are only one tool in the toolbox.



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