inspiration4life.org
July 2018
INSPIRATION 4 LIFE MAGAZINE GET INSPIRED! BE INSPIRED! STAY INSPIRED!
SIMPLY LIVE
BEAUTY IN UNITY
We Create & Educate Summer Programs Photo Credit: Juan Ramos
CRANIOSYNOSTOSIS CRANIO HELMET STORIES FROM MOMS & DADS AROUND THE WORLD
YOU'RE INVITED TO
Upcoming Events
LIVE ON AIRÂ WITH RITA SHOW
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COVER STORY WE CREATE & EDUCATE Rita Hernandez
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Live On Air With Rita Show Rita Hernandez
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ART 4 A CAUSE An Art Silent Auction to help raise funds for your Non Profit Organization or your Cause.
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SIMPLY LIVE Ruby Kaluza
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MEET MAURUS Christy Marie
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RAISING AWARENESS Nina Fattahi
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MEET SEVANA Katherine Gallant
Stay tuned for more great Issues of Inspiration 4 Life Magazine. We will cover more amazing topics such as Ministries, Leadership, Communities, Local Heroes, Beauty, Fashion, Sports, Events and so much more! Trademark and Copyright Laws Protect Inspiration 4 Life Magazine. No part of this Magazine may be reproduced without permission. Articles are submitted by Team Writers and images by Advertisers. Inspiration 4 Life Magazine is not responsible for Content submitted. Copyright 2018
MESSAGE FROM RITA HERNANDEZ CEO/Radio/TV/Web Host & Personality
Hello everyone! I want to thank everyone for being a part of our Journey of our Online Digital Magazine. Our Magazine is simply here to inspire you and help be a Voice to other talented Entrepreneurs, who love to share their stories and writings. This is another wonderful Platform we have put together for you to enjoy. We are here to help encourage those who love to write but don't know where to start, have hidden talents as writers, editors, photographers, graphic designers and so much more, to be a part of our Magazine. We want to inspire you to embrace new talented writers as they will be sharing their stories for the first time. Here at Inspiration 4 Life, we are a judge free zone and love to give others the opportunities to also live their dreams and passions. We have been trying to make this dream come true since 2010 but with so many obstacles in the way, this journey had been on standstill for many years. We are here now and we inspire you to never give up on your Dreams! Photo Credit: Alfonso Chavez III
In this Magazine, you will read about some of our amazing Inspiration 4 Life Team, our Members, Partners, Sponsors, Advertisers and more. There are no boundries of the type of inspiration we will cover in our Magazine. I also look forward to sharing our Inspiration 4 Life Local Hero Articles with you as well. We have so many amazing people in our Communities of San Antonio who give back and have the heart of gold. We definitely want to recognize those with kindness in their heart and ready to serve others. Inspiration 4 Life will always be thankful for our Local Heroes Segment on KENS 5 Great Day SA, Sunday Morning Show from 2011-2015. If you would like to be a part of our Magazine or have any questions, you can visit www.inspiration4life.org/Contact Get Inspired! Be Inspired! Stay Inspired!
Rita Hernandez
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Inspiration 4 Life's We Create & Educate Summer Programs BY RITA HERNANDEZ COVER STORY
Mission Statement Inspiration 4 Life is a Community Based Organization and Media Outlet, dedicated to promoting healthy lifestyle education and providing Inspiration, Motivation, Transformation, Restoration and Hope with “All Aspects of Life” resources for all demographics in San Antonio and to those from around the World. We advocate and educate to those who struggle with obesity, health issues, low self-esteem, all awareness issues, unemployment, homelessness, all types of abuse, finances, and so much more, with resources that contribute to a strong and healthy life as an individual or as a family unit. We serve as a Voice through our Radio, TV, Web Show, Media Marketing, Public Relations, Social Media, Blogging and Magazine Articles with reach to over 144 Countries around the World, plus Hands on Action by Giving Back with our Free Programs, Events and more to the Communities of San Antonio. We are here to Educate, Inspire, Impact, Save and Change Lives.
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"INSPIRATION 4 LIFE HAS BEEN INSIRING THROUGH ALL OF OUR PROGRAMMIN G SINCE 2005 AND HAVE INSIRED OTHER TO DO THE SAME."
We have been providing our Community Outreach Programs since 2005 and definitely inspired by my beautiful daughters Amanda and Jazzy! We’ve been serving families and children, from the homeless shelters, foster care, SAMMinistries, after school, summer programs, churches and more. It’s been a blessing to impact so many lives all throughout these years.
With the help of Sponsors, we are able to provide our programs to children, teens and families, all year long. My Jazzy has her own Story Time with Jazzy Radio Show and will have children/teens come join her, to read books Live On Air. They will also take home their very own book! The students will also create their own healthy meal and will also have Arts & Crafts!
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Every Monday (Ongoing) Inspiration 4 Life Studio Located inside Moade Center 301 E. Ramsey Suite 329
Live On Air with Rita 11:30am Be a part our Live Studio Audience! Tune in on iTunes Radio or you can also Download Free Mobile App TuneIn Radio. Search Inspiration 4 Life Radio.
Listen Online at www.inspiration4life.org/ListenLive
Watch FB Live at facebook.com/RitaMarieHernandez
──── Tuesday’s in July Inspiration 4 Life Studio Located inside Moade Center 301 E. Ramsey Suite 329
$35 Per Student/Ages 11-14 $37 We Create & Educate 11-1pm (July 10, 17, 24, 31)
*Story Time with Jazzy Radio Show *Create Healthy Lunch * Creative Activity *Speakers & Parent Education *Sponsored Guest Speaker
Activity Station Times Station 1: 11:15am-11:45am (11:45-12:15pm Lunch) Station 2: 12:15pm-12:45pm *Arts & Crafts * Color Time *Story Time With Jazzy Reading Program *Business Education * Financial Education *Parent/Child Education *Grandparent/Child Education * Create Healthy Meals * And More!
Spots Available. *Scholarships Available
RITA HERNANDEZ FOUNDER/CEO OF INSPIRATION 4 LIFE 210-237-7496 OR RITA@INSPIRATION4LIFE.ORG
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STEPHANIE CHAVEZ GARZA PROGRAM DIRECTOR & ASSOCIATE PRODUCER OF INSPIRATION 4 LIFE 210-440-7729 STEPHANIEI4LIFE@GMAIL.COM (LEAVE A TEXT WITH YOUR NAME & EMAIL IF NO ANSWER BY PHONE)
Tune In Monday 9th at 11:30am Special Guests
Dr. Patsy Torres
Donna Gilbert
I N S P I R A T I O N
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L I F E
P R E S E N T S
ART 4 A CAUSE Featured Art by Local Artist of San Antonio, Blas Hernandez
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NEED EXTRA FUNDING?
50% OF PROCEEDS DONATED
Art 4 A Cause is dedicated to help with funding through the Silent Auction Sales of Artwork by Local Artist of San Antonio Blas Hernandez.
* Churches *Ministries *Schools *Organizations * Galas *Luncheons * Non Profits *Scholarships *Fundraiser Events *And Much More
For more information, please Contact Rita Hernandez at www.inspiration4life.org/Contact
Access to an Awesome Community of Innovative Faith Based Entrpreneurs. For more information, please visit www.moadecenter.com Mention you read on Inspiration 4 Life Magazine.
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I N S P I R A T I O N
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L I F E
Business Card Showcase To place your Business Card in our Digital Magazine, please visit www.inspiration4life.org/Contact to request details.
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I N S P I R A T I O N
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L I F E
Business Card Showcase To place your Business Card in our Digital Magazine, please visit www.inspiration4life.org/Contact to request details.
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SIMPLY LIVE RUBY KALUZA
MWhen Rita first asked me to write a biography, believe it or not, I was scared. Now that you are reading this, I made my classic mistake of overthinking. It’s a bad habit of mine that has gained progress but always a work in progress. Let me introduce
selected to be 1 or 20 high school students to attend World Youth Day in Rome. In the next 2 years, my parents and I would work constant fundraisers raising money for all of us teens to attend World Youth Day. I was $500 short and very grateful that my parents were able to pay the rest and I could go. In those 2 years, I remember
myself, my name is Ruby Kaluza. I am born
getting up early, making tacos, wrapping,
and raised San Antonian, Texan. I’m an
transactions, curb paining addresses, bake sales,
Army brat with 1 older half brother, 3
and many more fundraisers to accomplish this.
younger sisters and the most wonderful parents, in-laws and brothers in laws a woman could ask for. This July will be 10 years that I have been married to my wonderful husband, Tom Kaluza. I am a child of god, wife, godmother, daughter, sister and businesswoman.
After all of that and then going to Rome was amazing for 10 days! I would graduate from Southwest High School and then pursue my education at Northwest Vista College and then 3 years later, transfer to Texas State University. I kept my moral and spirits up by joining a Catholic Sorority, MEO, serving as the Board of Directors Liason. I would also be a
As i grew up, I learned the value of faith, family, love, working hard and most importantly being a servant leader. As a girl I was in Girl Scouts selling cookies and by middle school, I went to on to be in choir. In highschool I would be in Pep Squad and Dance Team with about 2 weeks in ROTC. I tried ROTC and realized quickly that it wasn’t for me but dancing was. In my church I would serve as an altar server and
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then usher. In my sophmore year, I was
founding member, secretary and Vice President of the Medieval/Renaissance Society. I would graduate in December and then marry Tom Kaluza the following July. The day of my marriage is the one best days of my life. I love who we are as a couple, godparents and how we have changed and grown together.
Even though I have been blessed in many ways, I have always struggled with my confidence. I always thought I wasn’t good in what I did. However that has changed nearly 5 years ago. I was teaching in a charter district and by the seventh week, I submitted my resignation and signed up with Thirty-One. I knew I wanted to do something completely different and what I wanted to do as well. It was after my launch party that I realized what I got myself into. In my first year, I learned so much and just kept on swimming because I love the products and the foundation of Thirty-One. In these five years, I have learned and grown so much. I have realized my purpose and mission in life. Thirty-One has given me more confidence, action-oriented, goal focused and servant focused. Thirty-One has also allowed to grow to become a better
Thank you for Rita for letting a simple lady
version of myself.
write for a great Inspirational magazine
When I am not with events for Inspiration 4
honored. Thank you all for joining us on this
Life, church or working at home, I am wine tasting with my husband, reading, listening to podcasts, spending time with my husband and family.
such as this one, I am humbled and journey called life. My prayer is for all of you to become servant leaders in your life and to live life simply as the best version of yourself. Inspired and Blessed by YOU, Ruby Kaluza
Upcoming Events
SNEAK PEEK
Inspiration 4 Life is proud to bring you Inspiring and Empowering Events all year long. We have many great Partners we Team up with to make a difference in our Communities of San Antonio and Around the World.. Many of our Events are Free and open to the Public, by Donation or a Set Price. Events Hosted by Inspiration 4 Life, helps bring funding to our Organization, other great Non Profits and also those in need. We also Partner with other Event Hosts to bring our uniqueness and Connections and Media Productions.
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Our Everyday Empowering Events also provides our unique reach through our Inspiration 4 Life Live Radio/FB Live Broadcast. We reach over 144 Countries Around the World and provide amazing Connections and Referrals through our Network. We have been Serving, Advocating and Supporting Events since 2005 to give the exposure You need! We are always ready for any Event and ready to help you in any way we can. Live Radio Broadcasting Facebook Live Broadcasting Multi Media Productions Video Production Event Consulting Event Planning Vendor Referrals Social Media Exposure Reach to over 144 Countries Around the World Surpassed over 5 Million Hits on Inspiration 4 Life Website Client Referrals So Much More!
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BBWS Luncheon & Awards 11-2pm 301 E. Ramsey Suite 329
7/21
Inspired Networking & Awards 5:30-8:30pm 301 E. Ramsey Suite 329
7/28 Arts & Easts Fest 301 E. Ramsey, Suite 329, from 11-3pm For more details, call 210-237-7496
I4L HELP SUPPORT OUR YEARROUND FREE COMMUNITY OUTREACH PROGRAMS WWW.INSPIRATION4LIFE.ORG
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PRAY CRUSADE 300 WEEKLY RADIO SHOW
WITH
Rita Hernandez & Natalie Hardy AND SPECIAL GUEST PASTORS EVERY MONDAY AT 7PM ON INSPIRATION 4 LIFE RADIO NETWORK ITUNES RADIO OR TUNEIN RADIO
WWW.INSPIRATION4LIFE.ORG/LISTENLIVE/PRAYCRUSADE300 FB LIVE: @INSPIRATION4LIFEWORLDWIDE
Cranio Helmet Stories from Moms & Dads Around the World Brought to you by Stephanie Chavez Garza
MEET MAURUS by
Christy
Marie
Maurus Valentine Bell entered the world on February 27th, 2016. Born at 39 weeks, it was a quick labor and delivery with no complications. My husband and I were very anxious and excited to meet the newest addition to our family. Having 6 older children ranging from 11 years old down to 2 years old, we had left the name and even the gender a surprise. As soon as Maurus was born, we were excited to see we were adding a baby boy to the clan of 4 girls and 2 boys at home. The Dr laid him on my chest, and it was the best feeling ever. At first glance he appeared very healthy and perfect, weighing 8 and a half pounds. My biggest baby yet. As my husband began to take photos, he looked concerned and whispered to me, "what about his little head “? It looks like something might be wrong" I immediately asked, "what are you talking about? I had only been snuggling him against my chest and had not seen anything wrong yet. Right then, the nurse took Maurus from me to check his vitals and she said, "Oh, you know how babies look funny when they are first born.... He is fine". But I saw the look on my husband’s face, and the looks of the Dr. and nurses and knew something was wrong. I insisted to hold him again as soon as they finished checking him over. As soon as I did, I could see exactly what the concern was about. Maurus had a ridge running down his forehead, and from a birds-eye view, his forehead was shaped like a triangle. He had very deep pinching dents in the side of his head/near the temples. My heart sank. I immediately started to cry. What was wrong? Was his brain ok? Did I cause this somehow during my pregnancy? Even though I knew the answer was no and this wasn't my fault, millions of thoughts were running thru my head as I cried and held him tightly. It was a devastating feeling and even my husband was very upset and took the news very hard. So many emotions and so fast. Labor, delivery, excitement and then fear, all at once. Soon after, the pediatrician on call at the hospital came in. She checked him over very quietly and then said, "everything will be ok". I asked her, "How do you know? And “What exactly is this?" She then explained that Maurus was born with a rare condition called craniosynostosis.
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Occurring once in about every 2,500--3,000 births. The type Maurus had was a more rare type called Metopic craniosynostosis with trigonocephaly. She explained that the skull is made up of sutures and that the metopic suture in the forehead had fused too soon, before birth. She had not actually seen a baby yet with this type of craniosynostosis but knew if craniosynostosis because about 30 years ago, her little brother was born with craniosynostosis. She said her baby brother had to have a very invasive surgery
because that was the only option back then, but that he is now a very successful Dr. and you'd never know he had this surgery. She explained there are 4 main types of craniosynostosis and that Maurus appeared to be a non-syndrome, single suture metopic and trig case. She said she recommended we consult with a neurosurgeon and plastic surgeon as soon as possible and see about setting up the endoscopic surgery and helmets following that. Endoscopic option had only been around for about the last 10 years she said. We were relieved a little to have an idea now of what was going on. We left the hospital the next day with our referral to Cincinnati Children's hospital. As soon as we made it home, I immediately began calling to get the appointment set up with Cincinnati Children's. They called us back and quickly set up a catscan and appointment. For the next week and a half I googled and read whatever I could about craniosynostosis. Since we had not heard of it until now, I wasn't sure if I should google the condition or not, but I had to know everything I could about it. I wanted to ask the right questions, to prepare and understand. It was hard, and I felt anxious and worried and even a little depressed at times. Wondering if my son would for sure be ok and thinking of putting him through surgery. I did my best to pray alot and be positive. Our older children were in love with their baby brother, but were also very worried about his little head too. They began praying for him every single day. Maurus was also baptized and we had many people from our church praying for him. The day of the consultation came, and things started off with a catscan and then speaking with Dr. Stevenson, and Dr Pan (our neurosurgeon and plastic surgeon). They both agreed that Maurus was a severe case and confirmed that it was indeed metopic craniosynostosis and needed surgery. They explained that the metopic suture was more than 75 percent fused already and that because he was severe that the more invasive procedure might be best to consider.
They said Maurus would have to wait until He was 6-8 months old though for this procedure and that this surgery would require one or two blood transfusions. The skull would be opened from ear to ear, and they would reshape and remold bones around the eyes and forehead. I was very concerned though that, because Maurus was a severe case, what if pressure began to develop while we waited? What if he began to have seizures and vision loss or developmental delays. I had the gut feeling to just go ahead with endoscopic surgery to open that suture back up as soon as possible. They told us to go home and think about our options. I asked more questions, researched and read what I could. At the end of the day, I knew that even if cosmetically my son didn't look perfect, that I was more concerned about his brain. Many things I read and researched pointed out that earliest intervention is always a good thing. I even found a retired neurosurgeon to ask his opinion. He admitted that no matter what surgery is done, with craniosynostosis there can always be a chance for more surgery later, NO matter which option is used. Earliest intervention would help achieve the most normal head shape and prevent any chances of developmental delays, pressure or complications with the brain. He explained that because endoscopic surgery is still fairly new, that some surgeons may not be as comfortable yet with it because they have not had as much experience with endoscopic yet. Also, the metopic suture can be more difficult to fix sometimes compared to the other sutures. So, after weighing the pros and cons of the two surgeries, we decided to still go with our gut and give endoscopic surgery the chance while it was still an option. Endoscopic is only an option up to six months old, and preferred even by some Surgeons to be done by around 4 months. It can vary on the surgeons and which suture is involved. After 6 months the bones in the skull harden and are not pliable making endoscopic not much of a option. I knew for peace of mind that having the suture opened would be best. We thought we should start small, rather than possibly needing the large invasive surgery repeated later in life. After our decision was made, we signed papers and began the process to set it all up. Lab work, physical etc. needed to be done on Maurus and we wanted to donate blood for the surgery to have on hand.
The surgeons had said the chance would be less than 10 Percent that Maurus would need blood with this less invasive approach. We however wanted to donate just in case, so we also got that in order. My husband donated his blood to have on hand for the big day. About a week before the surgery, we were sent to Hanger Clinic where we would meet our Orthotist, Aaron Drury. He was very helpful and explained everything. Maurus had to have a few photos taken, and a 3D scan done to begin making his first helmet that he would wear following surgery. All the details were now set, and we began to count down the days to Surgery. It was nearly impossible to sleep or be calm especially the night before surgery, but on April 8th, we took our sweet 5 week old baby in to hand over to the surgeons. We just wanted to hold him and not let go, but we knew it was best and necessary for our child. So, with some fear, and tears we said goodbye and watched them roll our baby down to surgery. It was a few hours before we could see our baby again, and we were so nervous. Finally, we were called to speak with the surgeons as Maurus was being taken into recovery. They said everything went great and they did end up needing a little of the blood my husband had donated. They explained what to expect and we thanked them for their work.
It keeps you in the moment, and it slows everything down. You know, with film you can only have so many shots on a roll
We were then able to go see Maurus in the recovery room. He had just woken up and was crying so hard in the arms of a nurse. I couldn't wait to grab him from her arms. He immediately knew it was me and started to calm down. They quickly set us up in our own room and I could start nursing him again. This helped so much to comfort Maurus and also to calm my own nerves. It was hard to see his head swollen and bandaged. IVs sticking in and monitors and cords all over him. We spent a day and a half in the hospital and everything went very well. The nurses and staff were great at helping keep the pain under control and were there for anything we needed. We then went home and within a few days we went back to Hanger Clinic to get the first helmet fitted. It took several days to work Maurus into wearing the helmet full time. We started with an hour here and there and then a few hours until he was able to tolerate 23 hours a day, every day. Sleeping in it and everything. Maurus had some slight swelling the first few days after surgery so it made me nervous at first to take the helmet off and on. His two-inch incision was a little sad to look at and puffy. Once the swelling went down there was a large "soft spot" that was basically created when the bone was removed. Where the suture was "re-opened". Once the helmet could stay on 23 hours a day, it became so much easier. Maurus adjusted so quickly and slept in it like a champ. Within the month of his surgery, I found "Cranio Care Bears" on Facebook. They insisted on sending us a care package for Maurus and prayers for his recovery. It meant a lot to us. They are a fantastic organization. They send helpful items for surgery/recovery and many prayers. I then also found another amazing craniosynostosis group called "Cranio Kids- Craniosynostosis support". They have been a great group for support as well. Everyone is there to help each other with questions, concerns and share their experience. We had a couple follow ups with the surgeons as the next few months went on, and we had many appointments with our orthotist Aaron. There was even an ophthalmologist appointment also to be sure all was well with the optical nerves and no pressure present. Maurus passed the tests with flying colors.
No issues whatsoever. With all our appointments, both our surgeons, and Aaron always were very helpful and addressed any and every question or concern. Making sure the helmet was fitting Maurus just right and adjusting it as he grew. Once it was too small then a new scan would be done to have a new helmet made. The helmet helped to protect his head where the bone had been removed, and helped to remold and shape a nice rounded forehead for him. I realized quickly that my fear I had of what others would say or think, meant nothing to me. Maurus was adorable in his helmet and we made sure to decorate every helmet with a different theme. Everywhere we went, Maurus received a lot of attention. He brought a lot of smiles to every stranger’s face we passed by. A few silly comments here and there, but, overall, everyone thought it was so cute. They were also curious and would then make conversation with us, and that would give us the opportunity to help explain his condition and spread awareness for craniosynostosis. We continued helmet therapy for almost a year. Maurus went through 5 helmets by the time of his first birthday. We then had another follow up with his surgeons. They were so happy and surprised by the amazing results Maurus had. At our next orthotist appointment, he could graduate from the helmet. It was the best feeling ever.
Another group, cappskids.org shared our video I made after helmet graduation. "Meet Maurus" can be seen on their website, https://www.cappskids.org/videos/ and Hanger Clinic made a little slideshow to share on their Facebook page as well. https://m.facebook.com/story.php? story_fbid=10155346537640731&id=110492140730 So instead of wondering why this happened to us any longer, we just want to use our experience to help others. We want other parents to know, there is much hope and you are not alone! Especially since our son was such a severe case, and still able to achieve these results with the less invasive endoscopic approach. We just recently celebrated his 2nd birthday. We know that with Craniosynostosis, no matter what surgery route is used, there is always a (small) chance that more surgery, or the more invasive procedure may be needed later as he grows. Our surgeons are still very pleased however, and have told us that they do not expect Maurus to ever need another surgery. The chance would be less than 10 percent, which is amazing! They will continue to monitor and watch his growth over the next couple years, but are quite confident that all will continue to be great. And should more surgery arise, we now feel more educated on this condition, and stronger than ever before. We know we could get through this, and still be very thankful that this condition has more surgery options. We know all the prayers helped us to find the right care and right surgery choice for our son. He looks great, and you would never guess by looking at him that he ever needed surgery. He also has had no developmental delays at all. We want to thank Dr's Pan and Stevenson from Cincinnati Children's Hospital, and Aaron Drury from Hanger Clinic in New Albany Indiana. And a special thanks to the amazing Dr. working at the hospital that night, that could diagnose our son immediately at birth, and get us referred for surgery. She felt almost like a Guardian Angel for our son. We are so grateful for these amazing people who were there to help our son. We couldn't have done this without them. We are so thankful for their skills, knowledge, support and dedication to helping our son! We are so blessed and so very thankful.
Cranio Helmet Stories from Moms & Dads Around the World Brought to you by Stephanie Chavez Garza
RAISING AWARENESS By
Nina
Fattahi
I recently posted a personal story on several Mommy groups and received hundreds of messages thanking me for the information and for helping raise awareness about the importance of following your instincts when it comes to the health of you and your family members. Since the story was well received and useful, I want to share it with all of you: My family and I recently experienced a major health scare with our newborn daughter, and I wanted to share to help prevent another family from experiencing this in the future. To make a long story short, at our daughter's two month checkup, our Pediatrician noticed that our daughter had a very small fontanelle ("soft spot"). She casually recommended an ultrasound to get a better look. In order to better understand what we were facing, I started researching the possible conditions (thank you, Google) and quickly learned that time is of the essence. The ultrasound results came in and we received a very upbeat call from the Pediatrician saying that everything looked good and that we should continue to monitor her head over the next several months. Even though it was the news we were hoping for, we still decided to keep our appointments with the top two Neurosurgeons/Cranial Plastic Surgeons in NYC for a second and third opinion. Ultimately, our daughter had a confirmed diagnosis of Sagittal Craniosynostosis and the sooner it is diagnosed, the “easier” the surgery. If diagnosed before three months, a baby can get an endoscopic craniotomy which is about an hour surgery with one night in the PICU and followed by about a year of helmet therapy. If she was diagnosed after 3 months, we would have to wait until she was 6 months so she would be strong enough for a 7 hour full cranial reconstructive surgery that would require a blood transfusion and 5 nights in the PICU. While the diagnosis was not ideal, we are incredibly happy that we were able to fix it with the less invasive route since she was only two months old. We are glad we made effort to learn about the diagnosis on our own and keep the appointments with the specialists especially after we learned that this condition is only diagnosed with a clinical evaluation and that the ultrasound was worthless. A month ago, our daughter had her surgery at 10 weeks and is now doing great, thankfully. Despite all the stress and heartache we experienced with our first born, we had a happy ending due to my research and diligence. If we had followed the advice of the Pediatrician, the scenario would have been exponentially more difficult. We plan on switching to a Doctor with more experience and one that will recognize when it is important to get a specialist's opinion. I should also note that we met another Doctor at the same practice for her first month appointment and she didn't even notice that there was an issue which is really scary. My mother had actually noticed it at her birth and mentioned it but it didn't raise any red flags because we had no idea how important a "soft spot" is. After I shared our story with others, I've heard stories that tell me that misdiagnoses are quite common. We hope our story motivates all of you to ask questions and do your own research when it comes to your health and that of your family members. Doctors are smart and have our interests at heart but are not perfect. In later discussions with her Pediatrician, she acknowledged that she made a huge mistake however it was one that she learned a great deal from. When she said that she lost a lot of sleep over it, I believed her. In fact, she has already referred two other patients to meet with specialists because she doesn't want to take any chances of this happening to another baby. She also plans to educate the others in her practice to further raise awareness of this condition. We hope that our story will help other babies and families end up with a better outcome in the future. I hope this never happens to you but if it does, you are better equipped to have a positive outcome.
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Cranio Helmet Stories from Moms & Dads Around the World Brought to you by Stephanie Chavez Garza
MEET SEVANA By
Katherine
Gallant
Our journey first started with our 3rd daughter Sevana who is now almost 3 years old. Our family is from SK Canada. When she was born I knew there was something wrong with her head, it was very narrow and her forehead was more pronounced . I pointed it out to our doctor at her 2 week check up he did all the head measurements and her head seemed to be growing lengthwise and not width wise. So he said it may be something, it might not be but I'll send a referral to a paediatrician. So we never got in to see him until she was 4 months old. Again her head was still just growing lengthwise. Finally after 3 appointments of the paediatrician telling us lets just watch it, I told him I strongly feel like there is something wrong I want to know now if there is. So after 3 appointments of him telling us it was nothing, all of sudden he's sending a referral to a neurosurgeon . I was freaking out, didn't know what to expect. So he sent the referral. We waited a month to see him seen him in March and he ordered a ct scan. We didn't get that for another month. So by now our daughter is already 9 months old. She had her ct scan end of April 2016. Then we waited , tried calling his office several times to get the results, he was on holidays. We finally got the results in the middle of June that month and the wait was the worst ! We were so angry as to why we weren't called with results right away. So in the middle of June we went to our appointment with the neurosurgeon, he walked into the room and said I have 15 min to see 5 patients. So he goes on to say yes her sagittal suture is fused but it's strictly cosmetic no surgery required. In the next sentence out of his mouth he says but if you do decide to do surgery, it needs to be done right away because of her age. This should have been dealt with before she was 12 weeks old. I said I have been trying, I pointed it out at 2 weeks old! So we left his office with tons of questions and very conflicted and heartbroken. My husband decided we needed to be sent out of province, so we went back to our family doctor and requested to be sent anywhere for a second opinion. He sent a referral to Edmonton children's stollery paediatric head shape clinic. He sent the referral on the Thursday, they were calling me on Friday and we had an appointment on the following Tuesday. We saw Dr. Mehta in Edmonton, he was fantastic!! He walked in the room and said I know what's wrong with her and I know how to fix her. We were blown away, he didn't even see her ct scan and he knew what was wrong. So it was not cosmetic, her case was 1% away from being severe. She had the full CVR surgery and forehead work done July 12, 2016. She was 11 months old when she had the surgery she needed, a blood transfusion and was in the hospital for 5 days. It was the hardest thing ever to watch your baby go through that and hand her over to OR nurses while she cries for you. Everything healed great. She wore a helmet for 4 months which we did in Edmonton, so I drove back and forth every 2-3 weeks for 4 months. I would make it a day trip so 5 hours each way, it was long and tiring but I had 2 other kids at home so just had to make it work! She is now almost 3 and is doing great we go back once a year to Edmonton for check ups. My 4th daughter Jayda was born March 26, 2018 and we were told the chances of having 2 with the same thing were very rare. This time we knew what to watch for. So after she was born again we were watching it and I decided to send pictures to the doctor in Edmonton and they told us to ask for a ct scan. She had her ct scan a month after being born. We got the results in 2 days. So that was annoying remembering back to our first experience we waited over a month. The scan confirmed it, her sagittal suture was fused as well. So I requested for her to be sent to Edmonton again instead of dealing with Saskatoon and the run around. We saw Dr Mehta in the beginning of May and Jayda had endoscopic surgery May 30, 2018. It was just as hard going through it this time, as it was last time but this time at least we knew what to expect and knew we were in great hands. Jayda will also do helmet therapy but in Saskatoon , so no trips to Edmonton, other then for checkups with Dr Mehta. She will wear the helmet for 4 months as well. Dr Mehta's team has said they have only seen 2 siblings ever both have sagittal and it was 2 boys, never girls. We have 4 girls and only our last 2 have crainosynostosis . Our journey has been a tough one but our girls are both warriors and very strong and resilient! We are so grateful to the stollery and Dr Mehta and Wendy and the rest of his team for the amazing care we received!
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