Helping Our Friends

Ronald McDonald House Charities of Central New York is celebrating “Christmas in July” by hosting a community-wide Wish List Donation Drive to help support our guest families.

Throughout July, community members are collecting items on the RMHCNY wish list, which includes nonperishable food and drinks, office and household supplies, and children’s toys. With more guest families staying at the RMH, there is a greater need for wish list items and day-to-day supplies.

 Example wish list items include: coffee, bottled water, granola bars, bagels, dry cereal, English muffins, butter, individual snack bags of chips, fresh fruits and vegetables, oatmeal, peanut butter, small and extra-large trash bags, all-purpose spray cleaner, liquid hand soap, paper plates and paper towels, stainless steel appliance cleaner, white copy paper (8½” x 11”), glue sticks, baby dolls, family movies (DVD and Blu-ray), family-related video games for Wii and Wii U, and more. Gift cards to BJ’s Wholesale Club, Wegmans, Wal-Mart, Price Chopper, Tops and Target are also appreciated. 

 All items must be new for the safety of children with compromised immune systems. To view the complete list of donation items, visit www.cnyronaldmcdonaldhouse.org.

 “Christmas in July” culminates with a donation drive for community members to drop off any donations they’ve collected on Thursday, July 31, from 9 a.m. to 6 p.m. at the CNY Ronald McDonald House at 1100 E. Genesee St., Syracuse. For alternative drop-off times or to learn more about our needs for perishable items and volunteer-cooked meals, please contact Lee Wilder at lwilder@rmhcny.org.

 The Central New York Ronald McDonald House has been a “home away from home” for families with seriously ill children for more than 30 years. 

 When families with seriously ill children travel to Syracuse from counties throughout Upstate New York and Northern Pennsylvania to receive medical care at Golisano Children’s Hospital, other local hospitals and health care facilities, Ronald McDonald House Charities of CNY offers an atmosphere where they can share experiences with other families and have the comforts of home at a very reasonable cost.

 Since opening the doors to the new, fully handicap-accessible house in 2012, Ronald McDonald House Charities of CNY has been able to serve even more families in need and keep more families together during some of their toughest times. The larger house allows RMH to meet diverse needs and offer expanded services for new populations of guest families.

 

 

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Celebrate Family Wellness Month

By Mary Ann Russo, MS, RD, CDN, Pediatric Nutritionist

Did you know May is Family Wellness Month?  It was created to help families overcome their biggest challenges to staying healthy and connected – our busy pace of life.  The goal is to provide an opportunity to reflect on family habits, lifestyles and find ways to improve mental and physical health.  May is almost over but the positive results from changes in habits and activities will continue into the summer and the rest of the year.

What can you do for Family Wellness Month?

Sometimes the biggest obstacle is where to start. Do you wish you had more time to spend together? Can you improve physical health by adopting healthier eating habits or participating in physical activity? No matter what your answers are to these questions, it’s never too late to make a change for the better. Here are some ideas for taking charge of Family Wellness Month.

Change your family’s eating habits: This doesn’t have to be a complete overhaul of the way your family eats. Make a few small changes that your family will be able to make a part of your routine.

  • Try new foods no one in your family has tried before.
  • Cook dinner together one night per week.
  • Slow down and eat dinner together at the table instead of on the run.
  • Cut out pop and soda and replace with water.
  • Be a good role model for your children. If they have to eat their veggies, so do you!
  • Go grocery shopping, visit a local farm market, and let the whole family help plan the meals.
  • Find healthy alternatives to a favorite recipe.
  • Start a garden.

Get your family active:

  • Pick an new family activity to do on the weekend go for a bike ride, a hike, play a game of tag, go for a walk after dinner or if the weather is bad play an active video game.
  • Explore a new park. An inexpensive and fun activity is trying to visit every park in your city or neighborhood. Create a memory book by taking pictures of each park.
  • Have the entire family work together on a project like cleaning the house or yard.
  • Park farther away when you go to the store. Have the kids count how many steps they take to get to the door.

 Plan some family time:

  • Game Night: Board and card games never go out of style. Even a simple card game will give the family a chance to spend some quality time together. It also is a great opportunity for everyone to work on math skills, critical thinking skills and other brain functions so we all stay sharp.
  • Family Project: A fun family project to do together is make a scrapbook of everything you did during the past school year and plan on doing in the summer. Let each family member be in charge of a few pages that highlight their favorite activities with family, friends or schoolmates over the last nine months.
  • Volunteer together: Spend a day helping others and connecting over a common purpose.
  • Visiting Family: It is Family Wellness Month after all, so make it a point this month to go visit grandparents, aunts, uncles or cousins you don’t get around to seeing as often as you’d like. If family is too far to make a visit plan a Skype date with them!
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Summer Teen Volunteer Program at Upstate University Hospital Downtown Campus

By Sphoorti Bahandre, Intern Volunteer Initiatives

2013 Teen Volunteers

Are you looking for a volunteer experience for your teen this summer? The journey of volunteers substantially changes the lives of everyone they meet along the way. It’s the unknown situations that reward them beyond imagination. For more than 12 years, Upstate University Hospital Downtown Campus has celebrated a tradition of involving volunteer teens in the healthcare environment. Upstate will be starting its successful Summer Teen Volunteer Program July 7, 2014. This year the program will feature two, three-week sessions July 7 to 25 and July 28 to August 15 at the Downtown Campus for 80 teen volunteers.

This experience will allow teens to broaden their perspective involving career possibilities. Volunteers will assist staff and adult patients in more than 20 inpatient and outpatient departments of Upstate, things such as escorting discharged patients to their cars and providing comfort care at bedside.

Volunteers will attend training sessions where they will learn about wheelchair guidelines, patient confidentiality, personal skills to enhance the Patient Experience, and customer service skills. Teen volunteers will be also involved in Upstate University Hospital Downtown Campus’s daily Monday to Friday environment. This program offers a unique and hands-on opportunity for teens to learn about adult healthcare.

Sandra Delaney, director of Payroll Services at Upstate said, “My daughter participated in the Teen Volunteer Program last summer at the age of 14.  She was able to experience a broad range of real life situations, instead of what she might imagine from a classroom or textbook…she gained a much better appreciation for all of the facets and faces of healthcare that support their healing process…this experience took her from a dreamy 14 year old to a more open minded and compassionate, focused young adult.”

Rhonda Butler, manager of Upstate’s Volunteer Initiatives said, “The teen volunteers have been a big part of our volunteer program every summer. I really enjoy watching them learn the hospital environment and to better understand how important it is to take care of others. I think their volunteer time not only makes an impact in patient satisfaction, but also in the lives of the teen volunteers themselves.”

Teen volunteers at Downtown Campus are required to complete a minimum of 40 hours within a single three week summer session – one eight hour session or two four hour sessions per week. Schools, including Fayetteville-Manlius, Christian Brothers Academy, Baldwinsville, Cicero-North Syracuse, West Genesee and 18 other area school districts are an important part of Upstate’s Teen Volunteer program. We thank them for their contribution in making our communities better and healthier.

Teens who wish to join Upstate’s Downtown campus volunteer program need to apply at http://www.upstate.edu/hospital/volunteers/teen. New teen volunteers have an application deadline of May 30. The deadline for returning teen volunteer applications is May 16.

Brief Bio: Sphoorti Bhandre is a Public Relations Graduate Student in the S.I. Newhouse School of Public Communications at Syracuse University. She is interested in consumer, digital and healthcare Public Relations.  She served as an intern with Rhonda Butler, Director of Volunteer Initiative in the Spring Semester of 2014.

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An Insider’s Guide to Surviving Your Child’s Hospital Stay

By Elizabeth Nelsen, MD, FAAP

young girl in hospital bed with teddy bear

As a pediatrician, I take care of children that sometimes need to go to the hospital. I’m often in a position to explain to them what will happen when they are there. As a parent, I recently experienced what it is like when my daughter was admitted to the hospital after surgery. While we were there, I recognized some points that may be helpful if your own child is admitted to the hospital.

  1. Be an advocate. You know your child better than anyone else. If you recognize that your child needs rest, it’s ok to say no to family members that want to visit. If your child is uncomfortable, ask the nurse and child life specialist what can be done to help (for example, pain medication or a toy or video to help with distraction).
  2. Keep things normal (as best you can). If you have a younger child who takes a regular nap or two at home, try to have them nap at their regular time. Also try to keep the bedtime routine as consistent as you can. You might not be able to do everything you would at home, but ensuring that your little one gets to bed around the same time they do at home will help create a sense of normalcy. If your child has a favorite stuffed animal or toy, consider bringing that with you. If they have a favorite cup they drink from at home, bring that as well. It may help especially if your child is having some difficulty eating and drinking because things are unfamiliar or if they are recovering from something painful.
  3. Rest when you can. It’s hard to sleep in the hospital, even with the pull out chairs and love seats in the patient rooms. Plus, you are very focused on your child and how he or she is doing. It’s crucial that you eat, drink, and get your rest so that you can help to care for your child.
  4. Take notes. You will likely be tired and frazzled during your stay. This can affect your memory and concentration. Writing down questions you have for the nurses or doctors when you think of them will help you to remember what your concerns were when they come back to check on you and your son or daughter. You should also jot down their responses – again, just to help you keep track or if someone else asks you the same question about your child.
  5. Breathe. You’re in the best place possible for your child. Caring for a child that needs to stay in the hospital is not easy. The doctors, nurses, and staff at Upstate Golisano Children’s Hospital understand this and go above and beyond every day to provide excellent care for you and your child. Take a deep breath and know you’re in the best hands.

Brief bio: Elizabeth Nelsen, MD, FAAP, is an assistant professor of pediatrics at SUNY Upstate Medical University and Upstate Golisano Children’s Hospital. She is also an associate program director for the pediatric residency program.

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To Tell or Not To Tell?

By Janice Nellis, MS, CCLS

child life specialist with young patient before surgerySo your child is having surgery.  As a parent you are feeling anxious and have multiple questions running through your head.  How successful will the surgery be?  Will my child make it through the surgery ok?  Will my child be able to do the things they could do before surgery?  How much pain will there be?  Will I be able to be with my child when they go to sleep?  Will I be able to stay at the hospital with my child?  How do I talk to my child about the surgery?  Do I tell them at all?

This is all normal!  It is important for parents to talk with their child’s caregivers prior to the day of surgery and have all their questions answered.  The better prepared you are as a parent, the less anxious you will feel about the whole experience.  The less anxious you feel as the parent, the less anxious your child will feel.

As far as answering the question “how do I talk to my child about the surgery or do I tell them at all,” you can contact a Child Life Specialist to help you with this.  A Child Life Specialist is trained to help prepare children of all ages for their surgery experience.  Honesty really is the best policy.  Although it may be difficult to tell your child that they need to go to the hospital and have surgery, if we don’t tell them what to expect we run the risk of losing their trust.  At Upstate Golisano Children’s Hospital, the Child Life Program offers a pre-admission program to pediatric patients and their families.

At a pre-admission preparation visit, you and your child will be provided with the information that will help you feel ready for the day of your child’s surgery.  You will be able to see where you will be going on the day of your surgery and meet some of the staff that may be taking care of you.  Children are given the opportunity to learn about the hospital/surgery experience through play involving the use of medical equipment as well as view a movie about having surgery.  This hands on learning helps them to gain control over their situation and learn techniques to cope with their surgery.  Your Child Life Specialist will walk you through the events of the day of surgery and give you a tour of the Children’s Hospital if your child will be staying in the hospital after surgery.

Research has shown that “most children prepared for medical procedures experience significantly lower levels of fear and anxiety as compared to children who are not prepared. Preparation also promotes long term coping and adjustment to future medical challenges.”  (Preparing Children and Adolescents For Medical Procedures, Child Life Council, 2007)

For further information about how to talk to your child about surgery or to schedule an appointment for a pre-admission visit, contact the Child Life Program at 315-464-7506.

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Vegetarian Awareness Month

By Amy Merwarth, RD, CDN

October is National Vegetarian Awareness Month!  A well planned vegetarian diet can meet the needs of all ages of people.  When people talk about a vegetarian diet they typically talk about a diet that is free of meat, poultry or fish.  But there are different kinds of vegetarian diets. Take a look at the chart below for the various types of vegetarianism. 

Type of Vegetarian Diet

Excludes

Includes

Lacto-Vegetarian

Meat, Fish, Poultry and Egg Containing Products

Dairy Products

Lacto-Ovo Vegetarian

Meat, Fish and Poultry Containing Products

Dairy Products and Eggs

Ovo-Vegetarian

Meat, Poultry, Seafood and Dairy Containing Products

Eggs

Vegan

Meat, Poultry, Fish, Eggs and Dairy Containing Products

The key to a healthy vegetarian diet, just like any other diet, is to consume a variety of foods.  No single food can provide all the nutrients our body needs.  The more restrictive and limited your diet is, the more challenging it can be to get all the nutrients you need.  Vegetarians should pay attention to the following nutrients.  Look at the chart below to see which key nutrients are important, what their function is and what foods to find them in. 

Nutrient

Function

Sources

Calcium

Builds and maintains strong teeth and bones.

Milk and dairy products are the highest.  It can also be found in dark green vegetables such as turnip and collard greens, kale and broccoli when eaten in sufficient quantities.  You can also get calcium fortified products such as juices, cereal, soy milk, soy yogurt and tofu.

Iodine

Helps regulate metabolism, growth and function of key organs.

¼ Teaspoon of Iodized Salt.

Iron

Important component of red blood cells. 

Dried beans and peas, chickpeas, baked beans, lentils, soybeans, tofu, pumpkin seeds, black strap molasses, enriched cereals, whole grain products, dark leafy green vegetables and dried fruit (raisins, figs).  Iron isn’t easily absorbed from plant sources.  Therefore, the recommended amount of iron from vegetarians is almost double that of non-vegetarians.  To help better absorb iron it should be taken with foods high in Vitamin C, such as strawberries, citrus fruits, juices, tomatoes, cabbage and broccoli.  

Omega-3 Fatty Acids

Important for heart health.

Canola oil, soy oil, walnuts, ground flaxseed and soybeans are good sources.  However, because the conversion of plant based omega 3 to essential fatty acid in humans is inefficient, you may want to consider fortified products and/or supplements. 

Protein

Maintains healthy skin, bones, muscles and organs.

Eggs and dairy products are good sources.  Plant based sources include soy products, tofu, beans, peanut butter, meat substitutes, legumes, lentils, nuts, seeds and whole grains. 

Vitamin B-12

Produces red blood cells to help prevent anemia. 

This vitamin is found almost exclusively in animal products, so it can be difficult to get enough B12 on a vegan diet. Vitamin B12 deficiency may go undetected in people who eat a vegan diet because their diet is high in folate, which may mask a B12 deficiency.  Therefore, it is important for vegans to consider vitamin supplements, vitamin enriched cereals and fortified soy products. 

Vitamin D

Important for bone health.

Vitamin D is added to cow’s milk, some brands of soy and rice milk and some cereals and margarines.  If you don’t eat enough fortified foods and have limited sun exposure, you may need a Vitamin D supplement (one derived from plants).

Zinc

Essential component of many enzymes and plays a role in cell division and formation of proteins.

Zinc is not easily absorbed from plant sources as it is from animal products.  Cheese is a good option if you eat dairy products.  Plant sources include whole grains, soy products, tofu, tempeh, legumes, nuts and wheat germ. 

If you are not following a vegetarian diet but are thinking of trying it, here are some tips and ideas to help you get started.  Ramp Up: each week increase the number of meatless meals you already enjoy.  Learn to Substitute: take favorite recipes and try them without meat.  You may be surprised to find many dishes only require a few simple substitutions.  Branch Out: browse the internet for vegetarian menus, buy or borrow vegetarian cookbooks, check out ethnic restaurants to sample new vegetarian cuisines.  The more variety you add to your vegetarian diet, the more likely you will be able to meet your nutritional needs. 

Hearty Vegetable Lasagna

Ingredients:
1 (16 ounce) package lasagna noodles                         
2 (26 ounce) jars pasta sauce
1 (15 ounce) container part-  skim ricotta cheese
1 pound fresh mushrooms, sliced                                              
1 tsp dried basil
¾ cup chopped green bell pepper                                            
¾ cup chopped onion                                                                
3 cloves garlic, minced                                                 
4 cups shredded mozzarella cheese
2 Tbsp vegetable oil                                                                 
2 eggs
½ cup grated parmesan cheese
Directions:

  1.  Cook the lasagna noodles in a large pot of boiling water for 10 minutes, or until al dente.  Rinse with cold water, and drain.
  2. In a large saucepan, cook and stir mushrooms, green peppers, onion and garlic in oil.  Stir in pasta sauce and basil; bring to a boil.  Reduce heat, and simmer 15 minutes.
  3. Mix together ricotta, 2 cups mozzarella cheese and eggs.
  4. Preheat oven to 350 degrees F.  Spread 1 cup tomato sauce into the bottom of a greased 9×13 inch baking dish.  Layer ½ each, lasagna noodles, ricotta mix, sauce and parmesan cheese.  Repeat layering, and top with remaining 2 cups mozzarella cheese.
  5. Bake, uncovered, for 40 minutes.  Let stand 15 minutes before serving. 

Sources:  Mayoclinic.com, Teenshealth.org, Colorado State University Extension, Allrecipes.com.

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Safe Sleep

By Robert V. Hingre, M.D,  Assistant Professor of Pediatrics, Board Certified Neonatologist, Director of Newborn Medicine Teaching Program 

baby in crib on backEach year, Sudden Infant Death Syndrome (SIDS) claims the lives of more than 2,000 infants annually in the U.S.  The good news is that the death rate from SIDS has decreased by more than 50% since 1992, when the American Academy of Pediatrics (AAP) first made the controversial recommendation that infants be placed on their backs (in the supine position) for sleep.  This message was reinforced during a national educational program started in 1994, which was promoted as the “Back to Sleep” campaign.  The bad news is that SIDS rates have not experienced any further decline over the past decade, and we now need to focus on other risk factors to continue to lower SIDS risk and save the lives of current and future infants.

Since 2012 was the twentieth anniversary of the original AAP supine sleep recommendations, many organizations have tried to refocus their educational efforts on reinforcing additional (and expanded) safe sleep guidelines.  Parents and child care providers need to be ever vigilant about practicing safe sleep guidelines, and this is reinforced by the fact that currently 20% of SIDS cases occur when the infant is not in the care of one of the parents.  It is often a relative serving as an occasional babysitter who doesn’t know about safe sleep practices or someone who is using outdated information.  We now realize that such a practice is even more dangerous than ignoring the back to sleep recommendations entirely.  Occasional, or unaccustomed prone sleep on the abdomen places a young infant at an 18 times greater risk of SIDS, as they have not developed protective mechanisms for breathing while sleeping in a prone position.

The other troubling statistic is that while the number of SIDS deaths has been cut in half, infant deaths from Accidental Suffocation and Strangulation in Bed (ASSB) have quadrupled over this time period.  One of the most tragic scenarios leading to an infant death from ASSB is co-sleeping with a parent, and in many cases it is a mother who is exclusively breastfeeding her baby.  After analyzing all of the available research, the AAP has found that proximity sleeping/room sharing (having the infant in the same room as the parents) reduces the risk of SIDS by around 50%.  However, having the infant sleeping in the same bed alongside a full grown adult body is an extremely dangerous situation and the risks far outweigh any perceived benefits.  The infant can be brought into the bed for nursing, while mother remains awake, but he/she should be returned to their crib or bassinet to provide them with a separate, and protected sleeping space.

While there are numerous, and often costly, devices marketed to promote “safe co-sleeping”, the AAP has specifically stated there is no evidence that they have been proven to be truly safe. Whether these devices attach directly to the bed frame, or sit separately on the surface of the bed, we are told to assume that the risk of infant death from ASSB outweighs any convenience derived from parents sharing a sleep surface with their baby.

The other single most important factor that can further reduce the risk of SIDS is smoking cessation during pregnancy.  Researchers believe that around one-third of the current deaths from SIDS could be prevented if maternal smoking during pregnancy could somehow be eliminated.  This is now considered to be an extremely important area to focus our public health educational resources upon.   We also continue to recognize that exposure of infants to second hand smoke is a major risk factor for SIDS.

To ensure that an infant has a safe sleep environment, the AAP reminds parents of the following additional guidelines:

  1. infants should always be put to sleep supine (on their back) on a firm sleep surface until one year of age
  2. there should be no loose blankets, pillows, stuffed animals, or crib side bumpers
  3. avoid overheating and head covering during sleep
  4. cribs should have slats that are less than 2 3/8 inches apart, and those with drop-down sides are no longer considered safe, as they could lead to infant entrapment and suffocation
  5. sleep positioning devices (like wedges or side-sleep wraps) advertised to help infants with acid reflux and to prevent “flat head syndrome” are not recommended and have been linked to infant deaths during sleep
  6. when an older infant is developmentally able to roll from a supine to prone position, she/he does not have to be repositioned by parents

In addition to the aforementioned things to avoid, there are also two things that we should encourage to help lower an infant’s risk of SIDS.  Breastfeeding has long been recognized to have a protective effect, and recent estimates are that the risk of SIDS can be reduced by around 36% if an infant is breastfed after birth.  Exclusive breastfeeding for at least one month after birth has been found to reduce the risk of SIDS by more than 50%.

More recent information has brought the infant pacifier back into the limelight.  Regular pacifier use during sleep (with naps and at bedtime) has been shown in many different populations of infants to reduce the risk of SIDS by more than 50% – 60%.  The protective effect of the pacifier persists even after it falls out, so it does not need to be replaced by the parents.  To ensure that early pacifier use does not interfere with successful breastfeeding, many experts recommend delaying introduction of a pacifier until 2 to 4 weeks after birth, when a mother feels that successful nursing has been established.

It is now apparent that our educational message has to be expanded, and that it is not enough to simply preach “back to sleep” in an effort to reduce the risk of SIDS.  A number of other safe sleep recommendations should be promoted as part of our educational mission, if we are to try and further lower global SIDS rates and save additional lives of future infants. 

For more information, visit: A Parent’s Guide to Safe Sleep”.

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Breakfast Gets High Grades

By Roseanne Jones, MS, RD, CDN 

Do you eat breakfast? If no, what is your excuse?  Not enough time?  Not hungry in the morning (could be the late night snacks)?  Don’t like breakfast foods?  If there is one single best healthful habit, it has to be eating breakfast!

Here’s why everyone needs to eat breakfast:

  • After a night of sleep your body goes into starvation mode and the metabolism slows down.  Without breakfast to kick start the metabolism the body will stay at the lower metabolic rate and continue to burn less calories until it gets food.
  • Studies show that Americans who skip breakfast are 4 ½ times more likely to be overweight.
  • Adolescents who eat breakfast make better food choices throughout the day.
  • Children who eat breakfast get higher grades in school and are less likely to be depressed, anxious or irritable.
  • Breakfast eating children also behave better in school, have a better attitude toward school and are more likely to stay alert.
  • You just plain feel better! When you start the day with a healthful meal it sets the tone for how you will eat for the rest of the day.

If you’re just starting a breakfast habit you can start out slow by eating something small like a piece of fruit, a glass of milk or a cup of yogurt then build up to a healthful habit of including both protein and fiber that can fight off hunger until lunchtime.

Mornings can be hectic so here are a few ideas for a quick breakfast:

  • Leftovers from last night’s dinner – What?!  No one said it had to be breakfast food!
  • Instant oatmeal made with milk, add some chopped apples and cinnamon for flavor
  • Toasted frozen waffles with cut strawberries and whipped cream served with a cup of milk
  • Cold cereal and milk, sprinkled with blueberries
  • Peanut butter on an English muffin topped with slices of banana
  • Yogurt parfait: layer fruit, yogurt then granola
  • Quick Breakfast Burrito, recipe from Incredible Edible Egg:              

               1 flour tortilla (6-inch)
               1 egg
               1 Tbsp. shredded cheese blend
               1 Tbsp. salsa and/or avocado

To cook in the tortilla:

Place tortilla on a plate and microwave for 5 seconds.  Line a 2-cup microwave-safe cereal bowl with microwave-safe paper towel. Press the tortilla into bowl.

  • Break the egg another bowl and beat with a fork until blended.  Pour the egg into the tortilla. Add salt and pepper if desired.
  • Microwave on HIGH for 30 seconds. Gently stir and microwave until egg is almost set, 15 to 30 seconds longer.
  • Remove tortilla with paper towel liner from bowl to flat surface. Top egg with cheese and salsa. Fold bottom of tortilla over egg, then fold in sides.

Tips: Substitute with whole wheat flour tortilla and low fat shredded cheese. Look for > 2 gm of Fiber in grain products and don’t forget that using canned and frozen fruit and vegetables is a good option too.

What are some ways you plan to make your breakfast better?

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Who Will You Wear Gold & Red For?

By Brittany Metcalf, BS, CCLS

red and yellow ribbonsYou may have noticed the gold and red ribbons around the hospital this month. Do you know why they are up? September is Sickle Cell Awareness month and Childhood Cancer Awareness month. As a Child Life Specialist at Upstate Golisano Children’s Hospital, I have the privilege of working with brave, resilient children affected by these conditions.

Sickle cell is an inherited blood disorder that affects the red blood cells. Normal blood cells are smooth, round, flexible and shaped like the letter “O”. If your child has sickle cell disease, his or her blood cells can become stiff, sticky and shaped like the letter “C”. This can cause a variety of problems: anemia, terrible pain crises, strokes, and organ damage. More than 70,000 Americans have sickle cell disease. The disease primarily affects children of African ancestry or Hispanics of Caribbean ancestry. Sickle cell disease can be managed through medications and red blood cell transfusions.

In the U.S., childhood cancer is the leading cause of death by disease in children under the age of 15.  There are over a dozen types of childhood cancers. Here at Upstate Golisano Children’s Hospital, there is a saying “children are not just small adults”. This holds true for childhood cancers as well. If a child and an adult get the same type of cancer, the child’s treatment will be very different form the adult’s treatment.

Many children now survive thanks to new medications, ongoing studies and research being done. However, less than 5% of the federal government’s total funding for cancer research is dedicated to childhood cancers each year.

What can you do to help these courageous children?

  • Donate blood at your local American Red Cross donation center.
  • The 6th Annual Sickle Cell Anemia Walk-A-Thon is Oct 5th @ noon. This walk raises money for the Upstate Medical Children with Sickle Cell Anemia Fund.
  • The CureSearch walk is on Oct 19th. Registration begins @ 11AM. This walk honors children whose lives have been affected by childhood cancer in the CNY area, while raising funds for childhood cancer research.

Who will you wear gold and red for?

References:

http://www.stbaldricks.org/about-childhood-cancer/

http://www.allkids.org/body.cfm?id=412&action=detail&aeproductid=Greystone_peds&aearticleid=1039

 

 

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You Are Not Alone

By Gina Lozito
Child Life Specialist, CCLS

For the past few years, I decided that every year I am going to pick one new and different thing for me to try. As the Child Life Specialist on the pediatric in-patient Hematology/Oncology unit, I am often asking and helping kids to do something they wouldn’t have normally picked to do. Asking kids to hold still as a statue while someone pokes them to get blood or saying “you’ll need to take your medicine that may make you feel sick to help you get better even though you don’t really feel sick in the first place” seems unfair. However, helping a child truly understand what is happening, why it’s happening and how they’re going to get through it can really make all difference in the world to the child.

For parents, having a child in the hospital is something they wouldn’t normally choose to do, too.  In the hospital, every parent is having an experience they would have never imagined could have happened. This goes for any family that has come to the hospital unexpectedly. We ask parents to help us care for their child during a time that, for the parent, is their worst nightmare. If your child has a serious illness or injury, the responsibility that falls to you is unquestionably intense. Nevertheless, parents meet these responsibilities willingly. Most parents say they would switch places with their sick child in a heartbeat. Instead they provide, in every conceivable way, all the help they can to get their child through this situation. For many parents, this may be the hardest thing they have ever done before.

Here are some tips to help you help your child through these tough times:

  1.  Stay organized. Keep all the information, research, and patient education materials you’ve accumulated about your child’s illness in one place, this could be a folder or binder. Make sure you include medications, phone numbers, and insurance information. When you think of questions for your health care team, write them down right away in a notebook so you won’t forget to ask.
  2. Take breaks. It’s necessary to frequently schedule time for yourself, even for just an hour or two. If you can, try to get away from the hospital. Let a family member, friend, or a health care provider stay with your child. Once you are away, that time is yours, don’t feel guilty about how you spend it.  Have coffee with a friend, go shopping, whatever allows you to unwind.
  3. Eat right. Existing on coffee and hospital food can leave you feeling exhausted and run down. If friends offer to bring homemade meals to your home or to the hospital to help out, take them up on their offer.
  4. Let other people help. If someone says, “Is there’s anything I can do…” tell them. Friends and relatives most likely will want to help, but they might not be sure what you need. Make a list of some of the things that may need to be done, such as; mow the lawn, pick up a sibling at practice, feed the goldfish or just come sit with you in the hospital. You will be surprised at how useful it can make a loved one feel when they do something specific to help you and your child.

Ask any parent who has taken care of a sick child and you’ll find out something very important. You are not alone.

 

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