Take Your Pick By Laura Posada

There’s nothing like the sensory discovery of a season to really help bring it to life. Getting your hands on the fresh vegetables of the season is deeply gratifying and also makes for unforgettable fall family activities. The following ideas make for excellent day trips, or weekend getaways where you might consider also booking a stay at an overnight inn or bed-and-breakfast.

Lords of the Gourde: Think about visiting a pumpkin patch one weekend, where you can collectively select the celebratory gourde of your choice.

An Apple a Day: Apple picking is another fantastic autumnal plan, and better yet, you’ll end up with a full batch of healthy snacks for weeks.

Praise the Corn Maze: Many farms offer corn maze activities for kids that include puzzles, labyrinths, scavenger hunts and learning about farming.

Immunity Boosting for Fall By Laura Posada

We all know what it’s like to wake up on a November morning with that dreaded tickle in our throat, and that horrid, achy feeling that you know is just the beginning of what will turn into an awful cold.

It’s even worse when your kids are the ones who wake up with that nasty feeling. But there are lots of little things you can do to arm your whole family against these pesky seasonal maladies, and simultaneously boost everyone’s collective immunity.

* Research shows that eating eight servings of vegetables is one sure-fire way to increase immunity.

So think about putting carrot and celery sticks in your kids’ snack and lunch bags; and instead of making one veggie serving for dinner, come up with comprehensive vegetarian menus that feature three or four different vegetables in interesting ways. Don’t afraid to be abundant in your use of vegetables, and dare to think of vegetables as “entrees.”

* Another way to boost immunity is by cooking with lots of garlic, which contains allicin, the active ingredient known for fighting bacteria and infection. Never mind that garlic makes everything taste better anyway!

* Drinking at least eight glasses of water per day is another way to keep the immune system strong, as it promotes a routine flushing of toxins.
* Research also shows that not enough sleep can be detrimental to the immune system, so you should set certain bed time hours and keep to them, in an effort to keep everyone’s sleep cycle as balanced as possible. Drinking warm milk and counting sheep definitely come in handy if you have a little night owl on your hands.
* Consider implementing bi-weekly oatmeal mornings at home, as these grains contain beta-glucan, a fiber with antimicrobial and antioxidant properties.

* Fresh OJ in the morning is another Vitamin C no-brainer, as is fresh pomegranate juice, for the more exotic among you.
* Exercise can also help strengthen your immune system by improving blood flow, flushing away toxins from muscles and organs, and helping to keep the kidneys and endocrine system working well. Staying active also helps with germ elimination and to circulate antibodies.

On the Road Championship Tips By Laura Posada

Most of you know that my other half is NY Yankees All Star Catcher Jorge Posada.

During the last couple of weeks, to show my support, I have been on the road with him and constantly away from my home. With this very hectic schedule it has been impossible for me to cook at home and I have had to turn to discipline in order to stay in shape.




Up until now being disciplined has paid off and I continue to maintain my ideal weight. Let me share with you a couple of tips that have helped me even when on the road.

1. When packing always remember to take your workout clothing and your sneakers, that way you will not have any excuses not to get some needed exercise in to your busy schedule. Before starting your day, you can take a half an hour walk. It is an excellent way to sightsee while you to get your heart rate going. You can also visit the hotel’s gym and if the hotel does not have one look for one in the vicinity, they will usually give you a free one-day pass. You can also visit the nearest park where you can perform various exercises using your own body weight.

2. Always try to remember that a trip is a perfect time to relax your body and your mind and not necessarily a free pass to eat whatever is put in front of you. Try to maintain a balanced diet and consume produce that is typical to the area that you are visiting and in season. Try fruits and vegetables that you might not be able to eat back home and remember to control your sugar intake.

3. If you trip will be long, always bring a couple of snacks for you and your family. I recommend that you take apples, bananas, nuts, whole-wheat turkey sandwiches, low fat yogurt, carrots or celery sticks. You never know if your flight will get delayed and you will be stuck at the airport with nothing but fast food joints to choose from. Remember it is better to be safe than sorry!!

4. Keep in mind that it is very important to hydrate!! Always remember to drink at least eight glasses of water a day. When you are on the road and outside of your routine and your home it is very easy to forget to drink enough fluids. I recommend that you take a bottle with you that you can refill everywhere you go.

5. Finally, I will encourage you to try to maintain a healthy balance between planned activities and resting.

When you go back home you will jump back in to the daily grind and it is necessary for you to get enough sleep while you travel. Otherwise, you will return home even more tired than when you left.

Fit Home Team

The Posada Family Guide to Health, Exercise and Nutrition the inexpensive and Simple Wayby Laura Posada

"The Posada Family Guide to Health, Exercise and Nutrition the inexpensive and Simple Wayby Laura Posada"
Why did Jorge and I write "Fit Home Team"?
We wrote this book ( Fit Home Team) to share some of the things that we love to do as a family and that are part of a healthy lifestyle.
How did we accomplish that?I think my family is healthy because we have balance in our lives. You can accomplish that by learning about nutrition and being creative in keeping the whole family active.
Why do we put so much emphasis on health, balance and exercise in "Fit Home Team"?Due to past experiences with the illness of our son we learned the hard way the importance of health in our lives. Now every day we attempt to keep a balance in everything we do so that we can be there for each other for a very long time.
How can someone transform their life and the bad habits of their family? The parents have to find a way to be motivators and lead their kids by example. They have to stop making up excuses and start looking for activities that they will enjoy and that will keep them active and healthy.
How is this book "Fit Home Team" a good way to help American families to be attain health and balance? "Fit Home Team" is a simple guide that any family can follow on a low budget. It reminds readers of the simple things that we used to do when we were growing up and that are sometimes forgotten. It will lead families step by step on how to work as a team and make a change for life.
Do you think the average American family is addicted to the wrong food? I think the average family is so busy that they eat foods that are easily accessible just to get that meal out of the way. However, many times they make the wrong choices.

Why there so much obesity in kids these days? Kids are eating foods that have high contents of fat and sugar . Then, to top it off they are spending way too much time in front of the TV and very little time outdoor.

Why did we divide the book into seasons? We believe that it is extremely important to enjoy the seasons and what they bring. By changing activities according to the weather there is the opportunity to keep things different and fun.

Can good food be both fun and healthy? Of course, in our book we offer more of our favorite family recipes that are healthy and taste great.

What about water? What is the best way to use water in order to be healthy? That's easy drink plenty of water and stay hydrated at all times.

How we can get off the couch and do activities instead? Find options and think outside the box.
Working out doesn't just mean going to the gym!!!

How do we get kids used to TV and video games into exercise? Motivate them, encourage them, lead them, reward them!

And what about a couch potato mom or dad? For parents it is sometimes more difficult to get started, but if they motivate and challenge each other that will make it a lot more fun.

Is it true that it is better to eat a small amount of food more often then a few big meals? I believe that it is better to eat small meals and avoid what many people do which is starving all day and then eating way too much at night. That is terrible for your body.

What is the most essential fitness activity that the American family has to do? I don't think there is one specific thing. Try everything until you find what works for your family.



Check out below details of my book, myinterviews and much more!

All the links about me and my book!!

My website

http://www.fithometeam.com

My Twitters

http://twitter.com/lauramposada
http://twitter.com/fithometeam


Fit home team book:

http://www.amazon.com/Fit-Home-Team-Nutrition-Inexpensive/dp/1439109311/ref=sr_1_1?ie=UTF8&s=books&qid=1247327910&sr=8-1

Yes Network

http://www.yesnetwork.com/media/video.jsp?content_id=6670355

Myfoxny.com; Bidding Open For Yankees Motorcycle

http://www.myfoxny.com/dpp/good_day_ny/090909_bidding_for_yankees_motorcycle

Segmento Univision:

http://t.univision.com/content/videoplayer.jhtml?cid=2027773
http://www.univision.com/content/videoplayer.jhtml?cid=2022380

Republica Deportiva
Entrenando con Laura Posada

http://www.univision.com/uv/video/Entrenando-con-la-esposa-de-Posada/id/261470607

The Yankee Universe
Laura Posada appears on “Baseball Wives” reality show tonight

http://www.theyankeeuniverse.com/?p=5262

Laura Posada Among Prominent Latinos To Receive Trendsetter Award:

http://www.baseballdigest.com/2009/11/02/laura-posada-among-prominent-latinos-to-receive-trendsetter-award/

Wendy Show

http://www.wendyshow.com/2009/09/16/jorge_posada_fight/

Fox Interview:

http://www.foxbusiness.com/search-results/m/25345156/diamond-district-posada-s-charity.htm

E!True Hollywood Story: Baseball Wives'

http://blogs.suntimes.com/sportsprose/2009/07/laura_posada_baseball_wives.htm

ABCNEWS

http://abcnews.go.com/search?searchtext=laura%20posada

MYFOXNY

http://www.myfoxny.com/dpp/good_day_ny/091104-laura-posada-good-day-ny

Latinos Sports:Posada Keeps Swinging for Cause

http://latinosports.com/baseball/posadas-cause-continues.html.

Radio Interview:
http://multimedia.wfan.com/m/audio/24634928/laura-posada.htm

Article in Daily News:
http://www.nydailynews.com/sports/baseball/yankees/2009/07/08/2009-07-08_wife_of_yankees_slugger_jorge_posada_set_to_make_her_reality_tv_debut_on_e.html

Laura talking to Michael J Fox:
http://www.cnbc.com/id/15840232?video=1128445219&play=1

The New York Post
http://www.nypost.com/seven/08162009/news/regionalnews/secrets_of_the_yank_wives_club_184876.htm

The Jorge Posada Foundation, Gala 2009

http://slideshows.flintweddings.com/posada/

Summer Tips

In this economy, not too many parents will be able to afford sending their kids to summer camp. So the big question is how to keep kids active and having fun seven days a week and 24 hours a day? It is definitely a tough challenge but you can’t give up before you hear my suggestions.

First of all, you have to get your tools ready if you plan on spending time outdoor. Sunblock, water and a hat will be your best friends for those super hot sunny days. Once you have that everything else is up to you!

I suggest planning in advance for the week. Sit down with your children and find out what they would like to do. They might want to try some things that you haven’t thought of and which might surprise you. Try to arrange play dates with their friends so that they are not always alone and get bored of each other and you. I’m a firm believer of the more the merrier!!!

Also, remember that all the other mommies out there are in the same boat. If you can create a cool group of friends to get together and join you it will be a lot more fun for everyone! You can take turns watching the kids and that way have some well deserved time off which will save you from going insane. Being a mom is a tough job with no days off so if you can take a little time to relax go for it!

Look into your state’s department of parks and recreation and you will find many free activities and events for the whole family. If you are in NY the link is http://www.nycgovparks.org/. Also, if you will be going to theme parks check out their websites first because a lot of them have yearly passes for state residents. They also have many different deals and options to purchase entrance passes and you can save money if you just take a few minutes to check them out. For just an example check the site for Sea World http://www.seaworld.com/sitepage.aspx?PageID=313

When your planning consider the weather!!! If the temperature will be extremely hot consider indoor activities like children’s museums, art museums, bowling, movies or just staying indoor doing something special like an invention or craft.

Dear moms, these are just suggestions and I’m sure you have your own great tricks and ideas up your sleeves so don’t be shy and please share them with me!!!

In my upcoming book FIT HOME TEAM I’ll give you tips and tricks that can be used according to all four seasons.

The Jorge Posada Foundation

The Jorge Posada Foundation is a non-profit organization established by the New York Yankees’ All-Star Catcher, Jorge Posada, and his wife, Laura. Their son, Jorge Luis, was diagnosed with Craniosynostosis when he was just ten days old and has undergone eight major surgeries to correct the condition. Jorge and Laura are very grateful that all of Jorge Luis’ surgeries have been successful and that they were able to financially support the procedures. However, there are many other families who are not as fortunate. 

The purpose of The Jorge Posada Foundation is to: reach out to families in need, whose children are affected by Craniosynostosis, and provide them with emotional support through its family support network; provide financial assistance to underwrite a portion of the costs of initial surgeries in its partner medical centers; and encourage further research of this medical condition. The Foundation also strives to create awareness about the condition through events and through funding other educational outreach efforts.

KEYS ISSUES: WHAT WE DO AND HOW WE HELP?


SUPPORT FOR PARENTS AND CHILDREN
Jorge Posada Foundation’s Mentors Program
Sponsor of family conferences and events, such as: the North American Craniofacial Family Conference and the Children’s Craniofacial Association Cher’s Family Retreat

FINANCIAL ASSISTANCE TO FAMILIES IN NEED
Provide grants to and partner with medical centers to increase their capacity to provide pro-bono surgeries and underwrite associated costs, such as: The Children’s Hospital at Montefiore; The Institute for Reconstructive Plastic Surgery at New York University Hospital through NFFR; Connecticut
Children’s Medical Center Foundation; and Winthrop Medical Center

EDUCATION & TREATMENT - EARLY AND ACCURATE DIAGNOSIS
Sponsor educational seminars for pediatricians, such as the 2008 Craniosynostosis Symposium in partnership with Montefiore Medical Center
Partner with the National Foundation for Facial Reconstruction to develop a virtual teaching tool to be distributed to 15,000 doctors in third-world countries and throughout the U.S.
Provide grant to rehabilitate Craniosynostosis surgery recovery room at Centro Medico Hospital, Puerto Rico

INCREASE AWARENESS
Events such as the Annual Heroes for Gala in New York City and the Celebrity Base-Bowl Tournament in Puerto Rico
TV & Radio Public Service Announcements
TV programming placements, such as: ABC’s “Extreme Makeover Home Edition”; Fox Channel nationwide movie promotion of “Everyone’s Hero”; Discovery Channel’s “American Chopper” and “Pioneros”; YES Network’s “Ultimate Road Trip” and “Kids On Deck”; and other television and news programming in the U.S. and Puerto Rico
Newspaper & magazine articles, features, and PSAs, both in the U.S. and Puerto Rico, such as: Gotham Magazine, Daily News, Chicago Sun Times, El Vocero
“Play Ball” book signings, multiple locations

Why Did This Happen to Me? by Laura Posada

Ever since I can remember, I have had a very privileged life. I had almost all of the things that can make anyone happy, and everything in my life was going perfectly according to plan. Unexpectedly, something happened that completely changed my life. On November 28, 1999, in my beloved island of Puerto Rico, my son Jorge Luis was born.

Looking back, I think that was the first day I ever knew love at first sight, unconditional love, pure love, a mother’s love. Unfortunately, I can’t say that it was the happiest moment of my life, because my son Jorge was born with Craniosynostosis. I found out when he was barely ten days old, and my world crumbled.

When the doctor told me the news my mind was racing with questions. And I have to admit that my selfish attitude at the time asked, “Why did this have to happen to me?” Well, why not? What made me more vulnerable to this or that disease? And finally, why did I keep thinking about myself since it wasn’t even happening to me? That was precisely the worst part, that it was my newborn son, who was innocent, defenseless, vulnerable and had so much to live for, who had this condition. That question hung in the air, along with many others. What I didn’t see, couldn’t see at the time, was that my stupid plan was worthless, and that my fate and life were destined for a different plan.

Slowly the agonizing days went by while we waited for the first 12-hour surgery, when they would open my son’s skull and take out his small bones in an effort to reconstruct him. My daily menu featured desperation, frustration, and a sense of impotence, served by the day, the hour, the minute and even the second. I looked for information in encyclopedias, books, the Internet, and on Posada television, but they were all dead ends. Each time I found medical explanations with chilling illustrations that did little to satisfy my need for information. Though in reality, it was my need to hear another mother tell me that everything was going to be fine. The nights were an eternity and the days never-ending. I lost contact with the world and with the reality of the situation.

During those 9 months, I decided to wage an internal battle with the help of my friend, solitude. I didn’t even tell my husband Jorge how I felt, and would spend the day with a rehearsed smile pretending that everything was fine. I didn’t share my feelings with relatives or friends either, since I felt I was the only one, that no one else had this disease and that therefore no one else could understand how I felt. And things went on like this, ignoring the elephant in the room, until that day—the day before the surgery.

Everyone was already sleeping and I locked myself in the bathroom so that I could shower. Once there, my tired mind and body, unable to pretend any longer, gave in, and all I could do was cry and cry and cry. And it was precisely at that moment that I realized that life was showing me what my plan was. I couldn’t allow this to remain a secret and let other mothers feel the way I had felt. It was time to grow and open my heart to all of those families that were affected by this enemy, an enemy that for many years had inflicted its harm silently and unknowingly. Now I understand why this happened to me: so that I could help others avoid this pain and show them that there is a light at the end of the tunnel.

Now I understand how much happiness you can give another mother with a simple glance, some words of support, a hug, or just a call from a stranger who’s living a parallel life and who can tell her “everything will be fine”. I don’t feel like wasting my time anymore asking “Why did this happen to me?” Now I feel that, through the Jorge Posada Foundation, there are more important things that I can do to help the children and families affected by Craniosynostosis. To me, it’s clearer than ever that the “Why?” isn’t the question that matters, but rather “What will I do to help many people be happy?”

If I become pregnant “again" will my next child also suffer from craniosynostosis? By Margie Alvarez & Gian Carlos Gierbolini

"Parents of Gian Carlos Gierbolini"

I asked myself this question when they told me that Gian Pablo needed an operation for his Craniosynostosis,a condition that we didn’t have a family history of. He was our first son and the first grandson in our family.During the course of Gian Pablo’s operation, I asked lots of questions and found out that in some families it affects many of the children and spans generations,and in other families it is an isolated condition, like in our case. If I have another baby, how do I know it won’t happen again? But, I became pregnant again when Gian Pablo was only 11 months old. Just 5 months after he’d had his Craniosynostosis operation. I didn’t have time to think about or consider this so that I could decide whether to get pregnant. My other baby was already on its way.

The first question I had for my gynecologist was “Gian Pablo has Craniosynostosis, how do I know if this baby has the same condition? Is there any way to see it in a sonogram?” The answer was NO; you can only see it in the last weeks, and even then only in very severe cases. What calmed my husband and me was seeing Gian Pablo’s rapid recovery and how well his operation went. Only God would know how our next baby would be born. I had to wait, and those nine months of waiting were very long.

When Natalia was born, the first thing I looked at was her head, to see if I could see anything different about it. Everything looked OK and I thanked God, because the baby wouldn’t have to go through this experience. For the first few months, I looked at her head constantly to be sure it was growing well. My experience with Gian Pablo’s Craniosynostosis made me uneasy about other babies’ heads. I can’t help but look at a baby’s head to see if it has some deformity, and if I see one, I ask myself, could it be Craniosynostosis? Should I tell the mother, or would that be bad?

As a mother, I can’t help but wonder why Gian Pablo was born with this and what the cause is. I wonder about the future, and about whether his children will have the condition. All I can do is wait, and hope that with advances in science and the work of the Jorge Posada Foundation, someday we’ll know what causes Craniosynostosis.

What influenced us to choose a pediatric plastic surgeon? By mike and Beth McCormick "Parents of Joe McCormick"

Our son Joe was diagnosed with a sever case of metopic CS two months after he was born in 1998. Despite the obvious emotional turmoil, our focus quickly turned to finding a pediatric plastic surgeon who could “fix the problem”. 

During our search, we were referred to Dr. Frank Vicari at the Children’s Memorial Hospital in Chicago. We were already aware of the wonderful reputation the Children’s Memorial had worldwide but kept an open mind when we walked into the doctor’s office for the meeting. Within ten minutes, we both knew he was the one who would perform the surgery. He had a genuine confidence about him, which convinced us that the man knew what he was talking about, and that everything would be all right. 

We also discovered that he was a professor at the Northwestern University Medical School who had performed thousands of these surgeries, and his reputation within his peer group, both local and national, was nothing short of outstanding. He was the top in his field and our minds were made up that day.

Dr. Vicari has continued his work and has even designed a surgical instrument and a technique that results in less invasive procedures and remarkably short recovery times. We have recommended him to a number of CS families, one of whom even traveled from St. Louis so he could operate on their daughter.

Dr. Vicari is an extremely gifted, intelligent, and dedicated surgeon who fortunately for those diagnosed with CS continues to perform miracles everyday. We are forever grateful to him and the staff at the Children’s Memorial Hospital.

Who will help me? By Henry Medina And Sonia Lloret Bonet "Parents of Ederyk Medina"

This was the question I asked my wife. “Who will help me?”

We knew, after our son was diagnosed,that we’d be facing economic expenses that were beyond my income. Thank God that many doorsopened for us. One of them—the most important and most helpful one—was the Jorge Posada Foundation. Through the Foundation, our son has been able to receive his treatments and surgeries inthe United States. 

In addition to covering the costs of housing and travel, their unconditional support has been a real blessing for us. Today, Ederyk is a completely happy child, and my wife and I are evenhappier. God bless the Posada family and their staff.

We appreciate their strong sense of responsibility, their careful attention and dedication, and their support for these very special children.

Will My Son Survive the Surgery? by Peter and Nina Mottolese

We went into our son’s journey with many fears and questions. Before Peter’s surgery, we met with the team of experts: a neurologist, a craniofacial surgeon and an anesthesiologist. These miracle workers answered and explained in detail what each doctor’s role would be. On the day of Peter’s surgery we could not hold our child close enough, knowing we had to hand him over to these strangers, not knowing if we would see him again. As a mother, my last words to the anesthesiologist when handing him our son while crying uncontrollably was “promise me our son will wake up”. 

As first time parents and a mother who was told she would never bear her own child, it broke our hearts to find out our six month old baby would have to undergo this incredibly complicated surgery. All of our struggles with infertility and our disappointments and heartaches, would never compare to the way we felt knowing our little baby had to endure this journey. 

The Jorge Posada Foundation always had someone to answer our call and provided us with a mentor who was able to answer our questions and calm our fears. Our mentor provided us with a detailed account of his own family’s personal journey. The foundation gave us confidence and provided us with the strength to face our own challenge head on.

How Did I Find Out my Son had Craniosynostosis by Yasmin Moreales Rosa

Nature surprises us, even after all of our technological advances, every day. I am the mother of a six-year old child who was diagnosed with Craniosynostosis. As a mother, I would see him day after day, and I started to notice that his motor skills and his intellectual capacity were not normal for a child his age. Faced with this situation, I set out to find alternatives with which to help my son. 

My son received the necessary resources right away and was diagnosed with Craniosynostosis. The process required an emergency operation to correct his cerebral growth. As a mother, the process has been a long and exhausting experience, but the enthusiasm and joy I get from seeing my son regain, little by little, his quality of life, has been the greatest reward for all of us. I think our society drives us to instill a spirit of independence in our children. I will provide my son with all of the help he needs for his physical, mental and emotional development at every stage of his life. 

The Craniosynostosis diagnosis has helped us to value life even more, and has brought us together as a family. The support group that my son is seeing is exceptional, and we work together, contributing to a society that helps itself and others. I give thanks to God, the doctors that operated on Hector, and the great support group of the Jorge Posada Foundation.

How Did I Feel when I found out My Child had Craniosynostosis? by Michele & Peter Connelly

Steven was my Miracle Baby. I had previously suffered several miscarriages, so to actually carry a child to term was quite an accomplishment for me. Steven is my second child. My first son Christopher was born via an emergency cesarean section due to the cord being wrapped around his neck. I was asleep during the entire delivery. We were eagerly anticipating Steven’s birth, and I was looking forward to actually experiencing the birthing process. 

At first sight, Steven was perfect. Then about two months later, my husband and I saw it. The misshapen head, the forehead that popped out like a beak, and his eyes bulging more than normal. I was too frightened at first to investigate. The pediatrician said, “Let’s wait it out and see if he outgrows it.” By the time Steven was five months old nothing had changed, and it was time to take the next step. We saw a pediatric genetics specialist in Blythedale Children’s Hospital in Westchester County, New York. This is when I heard the news: Steven had Craniosynostosis. I stood in the doctor’s office, frozen in fear with all of these horrible thoughts in my mind. “What exactly is Craniosynostosis? What was going to happen to my son? Was he going to survive? What were the long term effects going to be?” I felt like my heart was being ripped out of my chest. All I could do was cry and hug the doctor, begging him to make Steven well. 

The next thing to cross my mind was “Michele, you’re a horrible mother. You passed this condition to your son.” The night we came home from the doctor, I couldn’t sleep all night, gripped with fear, afraid for my son’s life and again thinking to myself “This is all my fault.” Once I calmed down, I realized that I had to be strong for Steven. We had a long road ahead of us, and having a mother who was hysterical and crying all the time was not going to accomplish anything. Now we had to face the surgery. Our surgeons made us feel as comfortable as possible regarding the severity of the surgery. They answered all of our questions, and calmed our fears as best as they could. We were as prepared as we could be, facing the unknown and putting our son’s life in the hands of virtual strangers. 

The surgery was a nightmare, one of the worst things a parent would ever have to go through. When Steven came out of surgery, all I could do was stare at him, hold his hand and say to myself, “Why Steven?” He was unrecognizable from all the swelling, and all I could think of was “Please don’t let him die. Please let him survive this and live a normal life.” Steven was hospitalized for three weeks, having picked up a bacterial infection in the hospital. He was on IV antibiotics for about six weeks. We had to have a nurse make home care visits to give him the treatments. 

Fast-forward seven years, and Steven is incredible. He is a smart, intelligent young man who makes friends with everyone immediately. He is an orange belt in Karate, and learned to ride a two-wheel bicycle at four-years old. The scars from his surgery are virtually unrecognizable. He truly is my Miracle Baby.

What has it beenlike growing up with Craniosynostosis? by Nicole Perez

At first, I really didn’t know I had it. As the years passed, I started to understand what Craniosynostosis was about. Thank God, I’m happy now because I’m well and because I have a family that supported me through it all. Sometimes I feel bad because everyone asks me what happened to my head and I have to tell them all about my condition. If I wear a ponytail or braids to school, all of my friends will ask me about it because they can see the scar. 

Even though I feel bad sometimes, I also feel lucky, because as a result of this condition I’ve met Jorge Posada and his wife Laura and their children, Jorge Luis and Paulina. Thanks to the Foundation, I’ve been able to learn more about my condition and how to deal with it from day to day. I’m also proud to be a source of inspiration for many of the parents that are part of the Foundation and still have little children. The parents see that I’m 13 and I’m doing well and it gives them hope that their children will be okay too. 

Someday, I hope to become a mentor for the Foundation so that I can help families and children that live with Craniosynostosis. My dream is to be a pilot. I want to travel the world and show everyone that even though I have Craniosynostosis I can still reach my goals.

What has been the Worst or the Best Thing About Having a Child with Craniosynostosis by Peggy Chevalier & Mario Perez

At first, we just couldn’t believe that Nicole had been diagnosed with Craniosynostosis. She was already three and a half years old. I happened to find out she had the condition when I went to an appointment with a neurosurgeon, for my son, Oneil, who was born hydrocephalic. I brought Nicole with me to the appointment by coincidence, and when the doctor saw her he mentioned that her forehead seemed to be a little deformed. I thought it was strange that her pediatrician hadn’t noticed the deformity. I felt my whole world turn upside down. Having one sick child was hard enough; just imagine having two. The diagnostic test had been difficult, and I couldn’t imagine what the operation would be like. 

The worst moment for me was when they operated on Nicole. They were operating on Oneil at the same time. Nicole’s operation was really something. The scar went from ear to ear. When she came out of the operating room she was completely disfigured and crying. It really made a huge impact on me and on my family. The good part is that we were able to overcome the situation, even though it was an incredibly difficult time. When all of this was happening I felt very alone, and I’d had no idea that Craniosynostosis even existed. 

I kept asking myself, “My God, why me? We don’t drink, we don’t smoke, we don’t have any bad habits… why me?” After asking myself that question for so many years, I now know that everything in life has its purpose. Now Nicole is 13, she’s completely healthy, and she’s my reason for being, for living. And it’s because of her that I’m standing here now, stronger every day. I’m very lucky. I can look back and see that the bad parts are behind me. They were sad times, but my belief in God helped me through it. He gave me the strength to endure all that pain. I’m extremely grateful for my family. My daughter is marvelous and intelligent. She’s a good daughter, and most importantly she has a great deal of compassion for others. 

If someone had asked me then what I needed during that time, I would have asked for someone who could tell me about the condition and could give me the emotional support that I needed. Now I’ve become one of those people that I wished I’d had in my life back then. I’m happy that, through the Jorge Posada Foundation, I can educate and give support to the families in Puerto Rico that are dealing having Craniosynostosis in their lives. I’m very proud of my work as a mentor for the Foundation. 

Today, all I ask of God is that he gives me life and health in order to continue being here for my children until they can be on their own.

How has craniosynostosis affected our lives? By Linda and Steve Bradshaw "Parents of Eremy Bradshaw"

When we were first asked to write a paragraph on how Craniosynostosis has affected our life, our first thought was, “We just get one paragraph?”

What began as a diagnosis became a journey; filled with its own unique ups and downs. As a parent, when you first hear that your baby has a serious medical diagnosis, your initial feelings are that of shock and denial. Then you kick into planning and action mode, researching the condition, understanding the procedures, and choosing doctors.

But as with most things, there is a positive outcome as well. Through Jeremy’s dealings with Cranio we have learned to take one day at a time, or some days, one minute at a time. Many everyday issues just become less of a concern in the grand scheme of things. He is the best teacher of resiliency that we know. Instead of being afraid of doctors or feeling anger about having been through the surgeries, he sees it as a positive thing. Since Jeremy was six years old and very uncomfortable at the time of his second surgery, he truly sees the procedure as a good thing. He once said that he wished all kids could have that surgery, since it had made him feel so much better. We formed some amazing friendships by becoming involved in the Craniosynostosis and Plagiocephaly Support forum (www.cappkids.org).

Being able to help and support other families in the same situation aids in the healing process and allows us to move forward. Because Jeremy had multiple surgeries and a period of time where he experienced an elevated level of intracranial pressure, we do see repercussions on a regular basis in terms of emotional and short-term memory issues. As time goes by, although it’s not something we ever forget (just try to get a decent haircut with an ear-to-ear scar), it does just become a moment in time. We are amazed at the healing process, though surely the emotional toll is sometimes harder than the physical toll. Watching our son grow and mature; succeed in school; and participate in various athletics and activities, after undergoing three major surgeries in six years, is the best blessing we could ask for.

What have amazed us most are his resiliency and his entire outlook in life. As you can see from the photo, Joe’s surgery was a huge success and today, at age 9, he continues to excel in school and sports—even football! But most importantly, he still smiles all the time.

Justin Carrero and the Carrero - Bonilla Family

The Jorge Posada Foundation came in contact with the Carrero Family from Rincón, Puerto Rico on April 21st 0f 2009. We received a call from our star mentor from Puerto Rico, Peggy Chevalier where she communicated to us that she was in the hospital as her son O’Neill who suffers from Hydrocephaly was rushed to the OR because the valve that drains liquid from his head was obstructed and the doctors has to surgically intervene. She did not call us to let us know the difficulties that she was going through; she called to tell us about Justin Carrero. Justin is 19 months old baby that was born with a very severe case of Craniosynostosis and Hydrocephaly.

Peggy told us that he had been hospitalized for over two months and he had been operated on over seven times. Apparently Justin was accumulating cerebral spinal liquid in his forehead and the doctors could not figure out a way to correct this problem. She went on to explain that the family was in dire need of help as they were very poor and when the nurses in the OR had asked Jazmin (the mom) for diapers for Justin prior to going in to surgery she told them that she had no money to buy diapers. Immediately, we knew that we had to assist this family.

Natalia Ferrer, the Executive Director of the Foundation in Puerto Rico, went to the hospital the following day to visit Justin and Jazmin and to find out more details regarding the situation. We determined that the family had some immediate needs that needed to be fulfilled. Justin needed diapers, baby food, formula, chubs amongst others things. The Jorge Posada Foundation reached out to one of our corporate partners for assistance as the laws that govern the foundation do not allow us to give money directly to the families that we serve. Grande Supermarkets, our corporate partner, was touched with Justin’s story and decided that they wanted to assist. They put together a huge basket filled with all the things that the family needed and in addition they gave the family a gift certificate that they could use at any of the supermarkets in Puerto Rico to buy food for the family for the next few months.

Now that the immediate needs were fulfilled, we had to move forward with assisting the family with the medical situation. The doctors in Puerto Rico had decided to insert a valve from Justin’s head to his stomach to drain the fluid that he was accumulating in his forehead. This procedure was performed and a few days afterward the fluid started accumulating again. The doctors then decided to move the valve to the outside of his body connecting it from the head. This procedure did not work either and it was then decided that the valve would be inserted in his spine and connected to his stomach. Unfortunately that did not work either. 

The family was terrified at this point as every time that the doctors came to speak to them the conversation ended in the decision that Justin had to be operated on once again. This poor child had to undergo surgery ten times within a three-month period with no hope of finally correcting the situation. We decided that we had to reach out to another team of doctors as the team that was currently working with them did not have the situation under control and could not really tell them family what was going on. We reached out to Dr. David Staffenberg and Dr. James Goodrich from our partner medical center, Montefiore Children’s Hospital in the Bronx, NY. We arranged for the family to travel to NYC once Justin was in a stable condition. This process took a few weeks but we made sure to provide the emotional support that this family needed to get through this process of waiting and not knowing what was going to happen.

In the meantime, we found out that dad Edwin had lost his job as he was in and out of the hospital too much. Jazmin was strong through this whole process but she was very sad that she had barely seen her eight-year-old daughter for the past three months. The family lives in Rincon, which is a two-hour car ride from the hospital that Justin was in. The situation that this family was going through is so difficult to even put in to words; their faces showed the fear and sadness that they were feeling since Justin had been born.

Finally, the travel date arrived and the family was very excited. This was going to be the first time that they traveled on a plane and the first time that they visited any other part of the world. They only speak Spanish so we made sure that our airline partner, Continental Airlines, had someone who spoke the language assisting them in the airport. Once they got to Newark we had a Spanish-speaking driver waiting for them. They were taken to Montefiore Hospital were they would finally meet Dr. Staffenberg and Dr. Goodrich.

We met the family at Montefiore as we wanted to show our support and find out what the next steps relating to treatment would be. In the initial visit it was determined that they had to run some genetic tests to find out a little bit more about the medical condition. New CT scans were needed as well. The doctors told the family that Justin was missing an entire piece of bone in his forehead and that the dura (the lining that covers the brain) had a tear and that is why the liquid was accumulating in the baby’s forehead. Finally, this family had a clear understanding of what was wrong with their child. However, the journey was not nearly over.

The doctor’s explained that they would need to wait at least one year to one year and a half to perform the surgery to correct the condition. Justin’s cranium needs to develop further in order for the surgeons to shave off part of it and use it to reconstruct the missing part of his forehead. This was very difficult for the family to accept but the doctors explained that this would be a long-term solution to the problem and that immediately they would not perform surgery to correct this particular problem as Justin had been operated without success too many times in the past three months. They were explained that Justin had other problems related to the condition as well. He was born without a palate, which limits him to only drinking milk and baby food at this point. He is not able to chew hard food with this condition and the doctors are determining if that is one of the things that they will be able to fix at right away.

Currently, Justin is still in New York and undergoing the final testing that the Doctors need in order to decide what the next steps in treatment should be. The Jorge Posada Foundation has arranged for them to stay at the Montefiore apartments until all the necessary testing and treatment is performed. Laura Posada, Founder and President of the Foundation has personally bought an array of gifts including a stroller, a play yard, and clothes amongst other things for the family so they are comfortable during their stay. Both Laura and Natalia are in constant contact with the doctors and the family to make sure that Justin is taken care of. This boy deserves happiness and the Jorge Posada team will not rest until we know that Justin has received the necessary treatment to lead a happy and healthy life.

WHAT DO I TELL MY SON ABOUT HIS CONDITION?

By Lourdes Andino Alicea mother of Héctor Gadiel Ramos Andino

My son, Héctor Gadiel Ramos, was born with Craniosynostosis.

Thank God he feels fine, and now that he is already a 14-year-old adolescent, he says he feels at peace. We live in a housing project in Río Piedras and the children here tend to be very cruel. Because Hector’s head is slightly deformed they tease him and call him names. Hector is very intelligent and the things they say to him haven’t affected him.

Every day I tell him that he’s different from other kids, but that he’s fine. I tell him that he’s healthy, he can walk, he can eat, that he has all his fingers and toes and that he has his legs. I remind him that there are many people who are worse off and who have had much bigger burdens in life. I tell him all the time that he has to get on with his studies and with his life. I also make him understand that he shouldn’t feel inferior because of this condition, because inside he is just like all the other children.

A short while ago a psychologist evaluated Hector and she told me that his self-esteem was very good and that the results place him at the level of intelligence of a 16 year old. This makes me feel extremely proud of him, because it means he has been able to overcome his condition and that the things I have told him to improve his self-esteem have worked.