Last year I interviewed my friend, Daphne at Dylan’s Smile about her charity and her personal experience with having a son with a birth defect. It remains one of the most read blog posts on the site! Read it here.

http://www.cksinfo.com

Daphne brings comfort to families with children who have cleft palettes, lips and other other birth defects. Her charitable organization is accepting donations that will help pay for beautiful Gund teddy bears for children who are getting ready for surgery. You cannot imagine what a difference a teddy bear can make for a frightened child! Daphne is an amazing person with a great big heart! You simply cannot choose a better organization to support. Please donate today!

Click here for more info about the teddy bear program.

http://www.cksinfo.com

If you are looking for a pediatrician for your newborn or just want to change your child’s doctor, here’s how to go about it. Talk to other parents with kids older than yours and find out what doctors parents like best. You can also call the local hospital for referrals. Ask other parents as well as the pediatrician’s office manager the following questions:

• How would you rate the office when it comes to getting an appointment when your child is sick?
• Is the staff friendly?
• How long do you usually wait?
• Is the office clean?
• Are there separate “well waiting rooms” and a sick waiting rooms” or is everyone thrown together?
• Is there a special waiting room for newborns?
• Do you always see your own doctor, or do you just see whoever is available there?
• How’s the bedside manner?
• Do you do blood work at the office or do you send it out?
• Do you take my insurance?
• Do you take credit cards for co-payments?

There’s nothing wrong with visiting the office just to see what it is like inside, before signing up. In addition, do an online search with the doctor’s name to see if he or she has any malpractice claims against him/her. It’s amazing what you can find out about a person just searching. (I Googled this weirdo MD I once had, and found out that he was arrested in 2001 for illegal drug possession.)

Over the years I’ve figured out how to work the pediatrician’s office system. For example, if my child is sick at night, I start calling the office a minute or so before it opens so I can be one of the first to get an appointment. You cannot expect to call at 3pm and get in to see a doctor. Another tip is that I do not use doctors who are the heads of different children’s departments at the hospital. They make you wait so long, because they get stuck at the hospitals with emergencies in the morning.

Before you take your child in, whether he is sick or just getting a check-up, be prepared with questions. There’s nothing more frustrating than leaving and then realizing you forgot to ask the doctor something important. Good luck getting him on the phone later. But also, mind the doctor’s time. I don’t like it when other parents chit-chat for a long time and make me wait. So I want to be courteous to the doctor and other parents as well.

The most important part of any doctor’s visit is washing your hands and your child’s hands upon leaving. I actually wash my hands in the examining room while waiting for the doctor to come in. I wash them again when leaving. And again when getting home – and I do this thoroughly! When my daughter was small, I supervised while she washed and encouraged her to play in the suds a bit. With all those kids coughing, sneezing, pooping, peeing and vomiting in the office, you’ve gotta do your best not to bring those germs home.

My apologies – there’s simply no other way I could have said that.

Lilly Badilly spent an evening with an extra special group of children with cancer at Gilda’s Club last night in Fort Lauderdale. The children’s program is called “Noogieland,” in honor of Staurday Night Live’s comedian, Gilda Radner, who died from ovarian cancer in 1989. The kids learned all about writing, reading and Costa Rica. Then we did a craft project – a decorated paper bird to hang. Thanks to one of our Corporate Partners (who wishes to remain anonymous) we were able to donate a book to each of the children who participated. Thank you, thank you, thank you TB!

I cannot say enough about what a wonderful place Gilda’s Club is to be and how dedicated the volunteers and staff members are there. If you are not familiar with this organization, Gilda’s Club is a completely free cancer support center – not only for those who are ill – but for all member of their families. Networking groups, lectures, workshops, specialized children’s and teen programs, and social events are all part of their programs. The South Florida location is housed in a gorgeous old mansion in the historic section of Fort Lauderdale along the Tarpon River. They rely upon donations to keep their indispensable services going. I cannot think of a better cause to support! I am sure that Gilda herself would be so proud of what the organization using her name has accomplished and how many lives it has touched. If you or anyone you know needs cancer support, check out the website to find locations near you.

I hope to be invited back soon to do more craft projects. Special thanks to Elisa Jones, Noogieland Manager, for inviting me.

Gilda’s Club of S Florida is housed in a most inviting historic house

I was greeted by a gorgeous peacock upon my arrival at Gilda’s Club

Sharing my character voices with the children

The children loved making paper birds

An adorable 5th grade girl shows me her blue bird.

Clip art copyrighted by Bobbie Peachey,
http://webclipart.about.com

I thought it would be interesting to research many different statistics about American children. Here are some of the countless fascinating facts I discovered:

Health

Obesity

In a NHANES II survey of the Prevalence of Obesity in Children ages 2-19 years

• Ages 2 through 5  -  In 1976-1980 study, 5% were obese. In 2003-2006 study, 12.4% were obese.
• Ages 6 through 11  -  In 1976-1980 study, 6.5% were obese. In 2003-2006 study,17.0%were obese.
• Ages 12 through 19 – In 1976-1980 study, 5% were obese. In 2003-2006 study, 17.6% were obese.

Source: http://www.cdc.gov

Autism

Experts estimate that two to six children out of every 1,000 will have autism. Males are four times more likely to have autism than females.

We can estimate that up to 500,000 individuals younger than 21 have autism.

Source: http://autism.emedtv.com

Education

Gifted

The National Association for Gifted Children estimates there are around 3 million academically gifted children in grades K-12 in the U.S. That’s about 6% of the student population.

Source: http://www.nagc.org

Students who study music test better. Those who took courses in music performance and music appreciation scored higher in the SAT than those who did not participate in the arts. Music performance students scored 53 points higher on the verbal and 39 points higher on the math.

Source: http://www.childrensmusicworkshop.com

Literacy

One child in four in the US grows up not knowing how to read.

85 percent of all juveniles who interface with the juvenile court system are functionally illiterate.

Source: http://www.begintoread.com

Attendance

The number of elementary school-age children (ages 5 through 13) declined by 381,000 while the number of their high school-age counterparts (ages 14 through 17) increased by 329,000 between 2003 and 2004.

Graduation

The last census shows that high school graduation rates for women (ages 25 years and older) continued to exceed those of men, 85.4 percent and 84.9 percent, respectively. But 28.9 percent of men had a bachelor’s degree or higher compared to 26.5 percent of women.

Utah, Minnesota, Montana, New Hampshire and Alaska continued to have the highest proportions of people 25 years and older with a high school diploma or higher (around 92 percent).

Source: http://www.census.gov

Smoking, Alcohol and Substance Abuse

Cigarettes

About 40% of adolescents ages 12–17 years have tried smoking cigarettes, including a few puffs, in their lifetime.

Overall, Mexican American adolescents (41%) and non-Hispanic white adolescents (41%) had a higher prevalence of ever having tried smoking cigarettes, compared with non-Hispanic black adolescents (34%)

Alcohol

Sixteen percent of adolescents aged 12–17 years had their first alcoholic drink before age 13. Among those adolescents who had an alcoholic drink, 37% did so before age 13

Eighteen percent of males and 14% of females aged 12–17 years reported drinking before age 13.

Overall, 21% percent of adolescents aged 12–17 years had at least one drink of alcohol during the 30 days before the survey (Table 18).

Females (23%) reported a higher percentage of alcohol use in the past 30 days than males (19%).

Ten percent of adolescents aged 12–17 years had five or more drinks of alcohol in a row within a couple of hours on at least one day during the past month (Table 21).

Females (10%) were as likely as males (11%) to have had five or more drinks of alcohol in a row within a couple of hours on at least one day during the past month.

Non-Hispanic black adolescents (30%) were least likely to have had at least one drink of alcohol, compared with Mexican American adolescents (42%) and non-Hispanic white adolescents (41%).

Marijuana

Approximately 21% of adolescents aged 12–17 years had ever tried marijuana.

Source: http://www.cdc.gov

Teen Sex

Nearly half (46%) of all 15–19-year-olds in the United States have had sex at least once.

Teens are waiting longer to have sex than they did in the past. Some 13% of never-married females and 15% of never-married males aged 15–19 in 2002 had had sex before age 15, compared with 19% and 21%, respectively, in 1995

http://www.guttmacher.org

In 2007, the adolescent birth rate was 22.2 per 1,000 adolescents ages 15–17.

http://www.childstats.gov/pubs/

the total number of missing children reported to the police and entered into the FBI’s National Crime Information Center (NCIC) in 2000 remained at approximately 750,000, or 2,100 children per day, down from 2,200 per day in 1998.

http://www.missingkids.com

Households

There were 12.9 million one-parent families in 2006 — 10.4 million single-mother families and 2.5 million single-father families.

About 5.7 million children, or 8 percent of the total, lived in a household that included a grandparent in 2006. The majority of these children (3.7 million) lived in the grandparent’s home, and of these, about 60 percent had a parent present.

Hispanic and Asian children under 12 were more likely to eat dinner with a parent every day in a typical week than children who were non-Hispanic white or black children.

Source: http://www.census.gov

On September 30, 2006, there were an estimated 510,000 children in foster care.

Source: http://www.childwelfare.gov

Our journalist friend, Dallas Woodburn is the founder of “Write On! For Literacy“, a nonprofit organization that encourages kids to discover confidence, joy, self-expression and connection with others through reading and writing endeavors. In the past eight years, they have donated 11,117 new books to disadvantaged kids. They also teach writing workshops in schools, hold poetry, fiction, and essay contests, and award scholarships for young writers in middle school and high school to attend summer writing camps.

Write On! is one of seven national finalists for a $5,000 grant through the Glamour Magazine/Sally Hansen “Best of You” contest. They need your vote!!

Dallas with  stack of new books for her awesome Write On! For Literacy Program

Dallas Woodburn/Write On is the final contestant listed. All it takes is thirty seconds of your time to vote. The website asks for your name and contact information to ensure that every e-mail address only votes once, but they will not use your information or give it away to anyone.

Click here to vote.

For every vote they receive, $1 will be donated to DKMS, the World’s Largest Bone Marrow Donation Center. Just by voting, you make a difference!!

If everyone could vote and then pass along the link to two or three friends, this could really take off.

Dallas said, “Thank you in advance for your support. This grant really would mean the world to us. It would help bring Write On! to a national level, creating more chapters of Holiday Book Drives, awarding more scholarship money for young writers, AND helping increase the confidence of young people by giving them an outlet for creative expression by publishing their work.”

My Grandma Nellie pounded into my brain that if a recipe is too rich – savory or sweet – I should never consider cooking or baking it.This has always stuck with me, or rather haunted me in a way. I picture a 2 inch version of Granny standing on my shoulder with her hands on her hips while I’m reading recipes. “Don’t you dare bake that!”

My favorite TV chef by far is Ina Garten. She sometimes uses more cream and mayo than I’d ever consider using, but her basic cooking philosophy is marvelous. I’d love to have her over for dinner for great conversation and to show her that I am just as good a cook as she. Both she and her husband seem like interesting people. Some years ago Ina had a recipe for Pecan Squares, which must be the ultimate tasting food, because they are so rich, sweet and fattening. I have that cookbook and recently saw a repeat of that old episode. So I decided to please my late Grandma by trying to figure out just how many calories are indeed in that recipe. Here’s what I came up with:

These are approximate for the entire recipe (20 servings)….

• Butter (9 sticks!!!)  = 7,290 Calories = 520 grams saturated fat
• Honey = 1030 Calories
• Brown Sugar = 2,485 Calories
• White Sugar = 258 Calories
• Eggs = 240 Calories = 4.5 grams saturated fat
• Pecans = 6,575 Calories = 66 grams saturated fat
• Cream = 210 Calories = 15 grams saturated fat
• Flour = 1,800 Calories
• Total Calories = 19,880

The recipe suggests these are cut into 20 bars, so that is about 1,000 calories for each bar and over 30 grams of saturated fat. (1 Pecan bar is equal to the calories of 5 Hershey Chocolate Bars.) Each Pecan Square has 3.6 Tbsp of butter alone. I don’t want to figure out the cholesterol. It would be too upsetting.

What if you cannot resist and you eat 2 of these? Do we want our kids to get used to tasting and loving foods as rich as these?  Do you want to consume that many calories and grams of fat and not even get full eating it? Do you want to know how many hours of running it would take to burn all that off? I say no to all the above.

Okay my curiosity got me, and I looked it up. A 120 lb. woman would have to run for 2 hours and 15 minutes at 5mph to burn off one Pecan Bar!!! OMG!!!!

There’s nothing wrong with occasional indulgence, but my Grandma Nellie was right. Sometimes too much is just too much.

Sorry Ina. I still love your show.

There was a segment on Good Morning America this morning about a mother of 2 who protests junk food being served to her kids in school. Read the story here.  Essentially she believes that permission slips should be signed by parents before any child can be given sweets or any other junk food for any reason at school (birthdays, holidays, etc). She even gives her kids special containers to bring the junk food home from school to show her what was being served in the classroom. Apparently this mom’s own mother and grandmother were obese and had many health problems. She does not want her own children to experience the same health problems as they grow.

http://www.freeclipartnow.com

She’s got a point. But does she take it too far? Read the article, watch the video and then click on the link to voice your own opinion to ABC news. It’ll be interesting to see the input from other parents.

The story first appeared in the New York Times. You can read it here.

During a routine prenatal ultrasound, Daphne and Chris Christensen, from Norwalk Iowa, were told that their unborn child had a bi-lateral cleft lip and palate, a birth defect of the nose, lip and palate (roof of his mouth). Having a perfectly healthy son born 2 years earlier, this was obviously a shock. The rate of infants born with a cleft lip and/or palate in the United States, is about 1 in every 600 births, according to the Cleft Palate Foundation. This makes the cleft the most common birth defect in the USA. The cause is believed to include both genetic and environmental factors.

The Christensens’ story runs the gamut of every emotion imaginable – sadness, fear, guilt, hope, triumph and pure joy. Below is an interview with Daphne that will give you great insight into their son, Dylan’s story including the creation of Dylan’s Smile, the extraordinary charitable organization that Daphne and Chris started to help other families who face similar challenges.

Smart Poodle Interview with Daphne Christensen
Mom and Founder of Dylan’s Smile

What did you and your husband do to prepare for Dylan’s birth once you were informed about his cleft lip and palate?

I was 19 weeks pregnant when we first learned of Dylan’s cleft lip. At that time we thought it was just one side of the lip. Toward the end of my pregnancy, it was confirmed that it was both sides of his lip (bilateral cleft lip, one side complete and one side incomplete. Complete means the cleft went all the way up into his nose.) We also got a view on ultrasound that showed the cleft palate – many times this isn’t diagnosed until delivery.

Not many people know, but at the same time Dylan’s cleft was discovered there was also concern that he would be born with a fatal kidney disease. Distracted by this possibility, the cleft diagnosis was the least of our concerns. When Dylan was born, he did NOT have a kidney disease! At that point, a cleft lip and palate seemed so very minor in comparison.

Before Dylan, did you know anyone who had this type of birth defect?

Yes, I had a friend who had a baby just months before who had an incomplete cleft lip. Other than that, I had to think back to my childhood to a boy I knew who had cleft lip.

Other than the baby’s doctors where did you go for support after your son was born?

The Internet. I think that freaked me out more. Actually, I became really withdrawn during the second half of my pregnancy; it’s like I went into “protect mode” before Dylan was even born. I was busy preparing myself emotionally and being strong for my family. I never felt pity or asked “Why me?” I was and always will be very proud to be the mother of a child with a birth defect. My husband and I were ready to accept whatever challenges came our way.

How old was your older son when Dylan was born, and did he understand the situation with his baby brother?

Tucker was a dream big brother (he was two years old when Dylan was born). He never even realized anything was different about Dylan! When people would comment or ask about Dylan’s mouth and nose and the special mouthpiece he wore, Tucker would seem confused by the questions and curiosity. In fact, after Dylan’s first surgery he no longer had to wear his special mouthpiece. Tucker was terribly worried about where it was and when we would be putting it back in!

Did you experience strangers staring at your son, asking questions or making comments? And how did you handle this?

It broke our hearts to have people stare. I was so thankful for the people who were polite and brave enough to ask a question, and genuinely wanted to learn about Dylan’s condition. I’ll never forget the incredible sadness I felt when a volunteer from the hospital brought flowers into my room shortly after Dylan was born. On her way to his bassinet she asked if she could see my baby. I could tell from the look on her face, that she was startled and before I could even respond, she hurried out of the room.

My mom (Grandma Mary) and I took Tucker and Dylan to the Iowa State Fair the summer Dylan was born. He was only a couple of months old. An elderly woman came bolting from the crowded sidewalk, peered into the stroller and proclaimed “that baby’s got a hair lip!” I was mortified. Most people don’t know the old wives tale about a “hare lip” (it’s a very degrading, ill-used term); it has nothing to do with “a scar, thin like a strand of hair.” Rather it’s centered around a belief of pregnancy cursed by a black rabbit, or hare.

For the most part, people are very kind and good-hearted. I appreciate questions and being able to educate people. These few isolated incidents were hurtful and remain fresh in my heart. These examples demonstrate why our work through Dylan’s Smile is so important.

How many surgeries (and what type) did Dylan have to correct his cleft lip and palate?

Dylan has had three major surgeries to repair his lip, nose and palate. He has had several other minor procedures to correct issues with his ears (ear tubes, for example).

What physical challenges do children with facial birth defects like this experience?

Many times children born with cleft lip and palate have speech problems. Many children NOT born with a cleft lip or palate also have speech problems, so this has been easy for us to accept. Thankfully Dylan’s speech is wonderful – in fact, ahead of his age. Other issues can include trouble eating (milk and food can come up through the nose, or babies can intake too much air making their tummies uncomfortable), failure to thrive because of the troubles eating and other issues that vary depending on the severity of the condition and other syndromes that may be involved. Cleft lip and palate on their own are a blessing, in my eyes. Often times a cleft found in utero is the sign of much bigger problems.

I cannot imagine what that must have been like waiting for Dylan to come out of surgery each time. What was the recovery like for him?

The waiting was angst-filled, no doubt. However, we were in the hands of a very capable, skilled medical team. Recovery for Dylan was very smooth. I think I was more anxious about the process than he ever was. He had to wear arm restraints to keep his elbows from bending – the goal was to keep toys and fingers out of his mouth, away from his fresh surgical site. We had
to modify his feeding methods (using a syringe v. a bottle). All of these aspects were very manageable, and Dylan very easy-going.

Can you tell us about your organization, Dylan’s Smile? And how and when did you come up with the idea?

Dylan’s Smile is somewhat of a selfish endeavor for me. It provides an outlet for the energy, compassion and love I feel for children undergoing similar treatment paths as Dylan. I love to provide families with a glimmer of hope and children with a little extra comfort. Our main program of Dylan’s Smile is called “Beary Brave.” We raise money to give Gund®  teddy bears to children as they prepare for their first surgery. I knew before Dylan was born that I would do something with this experience as a parent and the emotions that surround it.

Is this what you do full time?

By day, I am a fulltime marketing professional in the medical field. I work on efforts for Dylan’s Smile in the evenings and on the weekends, primarily.

Is it true that you won a guitar from the rock band Kiss? Do tell us about it!

As a member of the American Marketing Association, I am afforded many fabulous opportunities for professional growth and development. I never knew how much one meeting in particular would mean for me and the organization (Dylan’s Smile) that was once just a dream. In March of 2007, I attended a lunch meeting where the speaker was raffling off an electric guitar signed by Paul Stanley of KISS. I won the guitar! I knew I wouldn’t have a need for the guitar, and my wheels started turning immediately. After lunch, I thanked the speaker and asked him if it would be ok if I conducted an eBay auction to raise money for the start-up fees for a nonprofit organization. Our local newspaper picked up the story and the rest is history! The guitar sold, and we were able to build our momentum from that point. Later I even learned that Paul Stanley was born with a facial defect. Talk about a coincidence.

What have you accomplished so far through Dylan’s Smile?

When I think about accomplishments, several smiles and family testimonials come to mind. Success for our organization means one more family has learned they are not alone. Through Beary Brave, our teddy bear program, we have touched many children and their families and “wrapped our arms around them.” even from miles – and countries – away.

What are your goals for the future of your organization?

Someday, I would like to have a scholarship program through Dylan’s Smile and be able to offer financial support for children and youth (from elementary to middle to high school) to help realize a special dream of his or hers – whether it is to participate in a summer sports program, music or art camp, whatever it is that builds on a dream or potential talent.

For now we maintain our vision of making the surgery process a little less scary.

What can others do who want to help your cause?

We are so grateful for those who share their resources! Monetary donations may be made through our secure website at www.dylanssmile.com. For more information on giving, please email daphne@dylanssmile.com. Thank you! We are also grateful for donations of new children’s books, games or puzzles (for various ages) which help the recovery process!

I have seen the photos of Dylan now on your website. He is a beautiful boy! How is he doing?

Dylan is a normal little boy. He does everything that other kids his age do and fortunately has not faced ongoing challenges with eating, growing, speech or any other developmental factor. Time will tell how his teeth and mouth continue to develop. After orthodontics, the next phase of surgical treatments will be discussed. More than likely, he will need bone grafting to modify his gum line. He is four now, and more curious about his surgeries as a baby and not at all shy to show people the two scars that form an inverted “V”from his nose to his top lip.

Looking back on your entire experience, how would you sum it all up?

Truly, it’s been an amazing adventure full of love, humility and grace. So many families are dealing with illness or disease or a defect that is beyond surgical repair. Our hearts go to them as we work to – at the very least – raise awareness of birth defects of the skull and face.

What advice would you give to a couple who has just found out their unborn or newborn baby has a cleft birth defect?

Surround yourself with knowledge, and try not to let the worry and anxiety of this day cast a shadow over tomorrow. Each phase in the journey is temporary. Whatever challenges are in the present won’t last forever. In the back of my mind I hear the words, “Lucky me, my heart is full!”

Thank you, Daphne, for telling us your incredible story. It mustn’t be easy to recount those challenging years. Your generosity in sharing Dylan’s life with others is sure to help so many other parents who experience similar situations. You have shown us that there is always hope and help, and that happy endings are not just for story books!

Please click here to check out the website, Dylan’s Smile.