My first Crepe!

I watched Rachel Ray last week and was inspired to try and make a crepe. How hard can it be? Flour, water, egg, vanilla & milk. I decided to go for it. I went to the food network on line to verify my recipe thoughts and tweaked it a bit. I used some substitutions:

• Egg White
• I can't believe its not butter (for the pan)
• Flour
• Skim Milk
• Peaches
• Blueberries
• Powdered sugar
• Maple Syrup

I literally had it made in 10 minutes. I set and rolled it in parchment paper so when it cooled I plated it. This way it would not fall apart.

It turned out great! Now off to jump rope!

Here's to your heart!

My German side!

Pork Schnitzel

I lived in Germany for a few years and I always was impressed on how Germans can live on fried food and beer and still be fit. Well, they WALK A LOT! When I lived there I tried to stay away from fried or potato's but I had my share of Riesling and cheese. I lost 10 lbs just from walking so much but my alcohol tolerance did go up a bit. Hey, I miss Germany! So today I decided to try and cook a healthy version of pork schnitzel. I had frozen a left over baget so I pulled that out. I was not sure if it would end up as a crouton when I initially froze it but I needed bread crumbs. So I pulled it out and just started crumbling. TADA...I have bread crumbs! I bought some pork on sale and just pounded it. Snitzel is a very thin pork so it was a good time to take out any anger. I made it thin! Instead of eggs, I used egg whites and breaded the pork. You do have to fry it in oil but at the end of the day, it was pretty healthy. I served it with some steam green beans, carrots and wild rice. All in LITERALLY under 30 minutes! I am so proud and it received rave reviews!

 

 

Here's to your heart!

Bella

I am not sure if there is a formula for Mothers sometimes. I am a Mother of two and I do have a special needs child. I have so many friends with children that are special. My niece is one of them. I see post on FB and I even don't want to read them because my heart hurts. Bella's CPK's are back up and she now has a home health care nurse. She is 8.

I don't understand, will never understand why this happens. Special children are given to special parents.

Here's to your heart.

Foodie

Most people don't know but I am a foodie. I have to say that I have become somewhat OBSESSED with cooking over the past year. So much so that I have become a student at the culinary institute. What is ironic is I don't necessarily love to eat but I do like to taste. I am a heart health advocate so my obsession started with cooking every meal in the American Heart Associations Love Your Heart Go Red for Women Cookbook. Most of the recipes are pretty tasty and easy to prepare. I kind of have been feeling like Amy Adams in the "Julia" movie but on the healthier side. I think what I love most is plating. Its like cosmetics for the culinary. If it looks pretty, it makes you want to eat it!

In my quest to start over this year I treated my self with new cookware. Another one of my obsessions is Rachel Ray so I purchased the set. I did the red. I know its not Caphalon or a more expensive line but on the home cooking budget they do the job. Its kind of fun to get new cookware. My next goal is all new dishes. Of course I will stay with the red motif!

Here is my issue with a lot of dishes, SALT! I watch every cooking show and my new favorite is the "Taste", I know  I know but I do like it but why does every chef mention ADD MORE SALT. Its almost as bad as chef  Ludo who wants to ax the Vegan because he doesn't think Vegans can cook something you can't taste. Hey, I don't eat sweets or fried food but I can bake and fry with the best of them. My Mom was from Georgia. I never had a vegetable growing up that was not fried in a baby daddy fryer! My next journey is the weight watchers 15 minute superfast recipes. I'll post pictures if they are plated properly!

Here's to your heart!

Deanna P

Avon Walk!

I have been so blessed with my family. I have spoken about Lois Lane before, my sister,
 but she is a breast cancer survivor and someone who has always been there for me...even in my darkest hours. I love her so much. As an Avon Walk Alumni, I am ready to do it again. 39 miles in two days! I do speak of heart because I am a survivor but cancer, chemo and radiation take a huge toll on your body, especially your heart. I have often said this that one cause is no better than any other but we should work together to make changes and save lives. This walk is for her. Please consider donating or joining me. Its an inspirational event and yes, I am going in for my mammogram soon! Pay attention to your body!

http://info.avonfoundation.org/site/TR/Walk/WashingtonDC?px=3841838&pg=personal&fr_id=2361

Here's to your heart and your over all health!

Deanna P

Matriach

I often wonder my strength. God gives you only what you can handle, right? Well he clearly has more faith in me than I do in myself.

As I petition, pray , hope for a non eventful January, well its not so good. My Grandmas' cancer is back and at 88 she is moving forward with chemo again. She had heart surgery last year and chemo 6 years ago for colon cancer. I guess I have some strong genes in my bloodline. The cancer is everywhere.

I lost my parents so she is my parent so to speak.

My family likes to one up. I say this jokingly. I have a sister, biological. Way to much Jerry Springer there but I spoke with her last night. The last time I saw her was my Moms funeral. The same day my Grandpa died. Yep, we like to one up. So last night my sister and I spoke. She has cancer. Can we not make a call without a ping pong match?

I spent 3 hours at the hospital today. Timing check here?

I have Ischemic Optic Neuropathy. With my Cardiovascular disease, pregnancy issues, DVT  so much more, what a catch I am! I don't fit the mold. I am so blessed for my children and my life but its often a reminder, and not to seem morbid, but life can and often is short. As heart month is approaching, its important to understand your body. I had a heart attack in my 30's! It just is in my genes.

I believe in love and life. Don't forget to hug someone everyday and be thankful for the blessings in your life.

Here's to your heart.....

Love, Like or lust?

Gosh, doesn't this apply to 99% of our lives! Food, Fashion and relationships. Its a funny dynamic. Shoes are a good example of that and yet so are beer goggles. We want to see the fantasy but the reality is a shoe that may be oh so fab can cause you so much pain and waking up next to someone who may have looked a little different while under the influence, yet that can be scary too. Hypothetically speaking of course.

How do we REALLY decipher? What is real and what is fantasy? Every morning I stand on the scale, sometimes just on one foot in hopes my miracle number shows up. The reality is it won't happen but the fantasy is if I remove all items of clothing, including any rubber band in my hair, I just might be back to the weight I was once when I was 18 :)

This brings me to love, like or lust. I admit, I am a self sleeve wearer. That has really proven to not be such a great trait of mine! I can self destruct with the best of them. Working on that.

I think its all about love in life. Love is unconditional and should not judge. OK, we do but believe a true friend and a true love, will always see through the goggles even when they get a little bit cloudy.

Finding my tune~

Who do we dress or undress for? :)

 

As I am engulfed in the Golden Globes, it made me wonder, who do I dress for? What is the perfect dress? I think I have always been less than perfect but always wished I had that look. The breathe taking OMG look that every guy wants and every girl wants to be. Throw in some Christian Louboutin and its a perfect night. :) Who do we dress for or should I say undress for? Lets face it, we usually dress for other women. Fashion is fun. However, I will say, some of the guys really stood out to me. I love a man in uniform or a great tux.

Ok so I am obsessed with fashion so to me award show fashions really are what the award season is about.

 http://nydn.us/1kx9Rdu

The New York Daily News (link above) showcased some beautiful dresses. I love the simple but elegant look. Lupita really stole the red carpet last night. It very much reminded me of Paltrow from a previous year. These were just some of my favorites.

 

Maybe this is why I love pageantry. I get to look for that perfect dress, which I have yet to nail but it sure is fun looking for them!

What is your perfect look? The best answer I ever received was the look that you feel like a million bucks in. Fashion is a great deal about finding your fit and your color. Perfection is perception so I will continue to look for my perfect. I am such a girl. I just love fantasy!


Finding my tune~

Sherose

Throughout the years I have learned that everyone has a story, a reason, a purpose. They can be big or small but in someway we all impact someone. Yes, there are bad situations but I think so many more good impacts. When I was in high school and college, I used to volunteer at nursing homes. I so admire ANYONE who works in geriatrics because it is tough.  Emotionally and physically. What that time taught me was to listen and you just might hear some amazing stories.

Over the years I have continued to listen and not disregard someone because their story is theirs and judge not for shoes you have not walked in. In pageants, especially platform based pageants, you really come to realize how much people are impacted by life and this creates their stories. There are so many heartbreaking illnesses that it truly can shape a person and also life events such as tragedy or abuse.  I often think abuse is over looked because it is uncomfortable. It's embarrassing to live through it and uncomfortable for people who have never lived through it to talk about it. It always makes people question your choices or how or why did you put yourself, or keep yourself in those situations.

I was fortunate to meet a wonderful and amazing lady named Laquisha Hall at the Mrs Maryland pageant about 5 years ago. She was not only brave enough to share her story but it was also her platform. It struck me in a way that yes, I felt uncomfortable because I just want to "fix" it but also because I related to it on many levels...which made me feel more uncomfortable. I think it would surprise some people to find out how many people go through abuse either in the hands of strangers or in the hands of someone you know and love. It's about control and it is terrifying.

It's hard to explain my childhood. I really don't remember a lot of it. We moved a lot and there was always tension at the house. I was always academically inclined but I spent a lot of time isolated. This is why skating became my escape. If I could hear the music, it was a peacefulness and beautiful place. I dreamed of getting out, sleeping trough the night and not under the bed and just hearing that music everyday. I ran away 6 times in high school. My friend and I drove from Florida to Canada. Yep, Canada. I was not promiscuous and did not do drugs, I just wanted peace. Because I was academically inclined I mange to graduate HS on time after missing so much time ( I was in honors classes and had some pretty amazing teachers).

I try to shut a lot of it out but the reality is that my past makes me who I am. I don't want to relive it, cast blame or victimize myself but it was my reality.  It's always interesting to me that the man I was the most afraid of is also the one that encouraged my dreams. He was a dreamer too. This was the level we connected on.

We were watching " Lifestyles of the Rich and Famous" one day and they had a segment of the American Academy of Dramatic Arts. He dared me to audition. I applied and audition and much to my complete surprise was excepted. I think I watched Fame and flash dance way to many times. Throw in some Dirty Dancing and you can see were my head was.

He gave me a lot of independence but yet controlled. I had a lovely Ford Escort Wagon, yes a very sexy car, as I embarked on driving from Florida to California by myself to chase the dream. My car was pretty full but not organized and I had enough money for a few hotels and enough tuna cans for food. Let the dream begin.

Florida is a long state, period. Even from Tampa its 6 hours to the state line especially when getting on 10. I drove with my cassette tapes blaring and my hopes of Hollywood. I have always been a drinker and no not always alcohol:) but diet coke so I always have to go to the bathroom. I have been checked time and time but you will rarely see me without a beverage in my hand. Another story for another day but my Dad once left me on 20 while driving to Arizona because I had to make another stop. Hey when you have to go you have to go!

I stopped at a rest stop in Louisiana. It was not really populated but my Grandpa was a truck driver and I just was never afraid of stops. I still remember what I was wearing. I remember the glasses. I came out and there was a white car blocking mine in. He presented himself as a cop. He was dressed the part.

He started asking me questions and said there was some drug thing so he had to search my car. He opened up my back door and my pink bunny fell out.  My parents when I was younger had given me a pink bunny and a teddy bear. To this day, they are in my car everyday. I don't recall a lot of what happened. I survived and I don't know why. He was put to death in 2006.

I just blocked so much of this until last year. I had a neighbor who took advantage of a situation while my husband was deployed and I had a friend in distress. I had truly forgotten of sorts but just made me a mess. Andy was called in Afghanistan because of the attack and I just feel I was too liberal in my allowing him in my home to help her.

I was a mess last year but I allowed myself that luxury. Shame on me.

NO ONE should ever make you feel the victim, or take away who you are or who you will be. If they do, they win and frankly its about control. I could not over power but I survived. If you allow yourself to be the victim, they win. Be you and never apologize for what you cant control and embrace what you can. Be the rose. We all will find our time to bloom. Thank you Laquisha for giving me the courage to share.

Taking a deep breath!

It was 5 years ago that my amazing son was born. We were given grave prognosis at times. Carter has chronic lung disease and we were told he may be on a trach for life. We were also told he would be blind. It's been a journey but today I made a call I never thought I would be making. Please pick up our oxygen tanks because he doesn't need them anymore. I did reserve the condenser but Carter has not needed supplemental O2 for a year and sees with his ever so fashionable glasses! 2014 is looking good! His sister thinks so too!

Say Something......

Music is such a big part of me. Even in my darkest hours or brightest light of the day, it's music that gets me through. It's a language that is universal. When I was a little girl, I was a skater. My family did not have resources for lessons but I skated everyday for 6-8 hours a day. I taught myself how to do a double axle and had Olympic dreams. Keep in mind I also was in a neighborhood pageant and was crowned with a Burger King crown so I have always been a bit far reaching in my dreams.

My skating was more about the music. It was my escape. When the weather was really bad and I could not go outside, I could still hear the music as I looked outside.

Think about lyrics. Aren't there some that you would really love to say to someone but don't have the nerve. Music is the excuse and a blessing. Always listen to the lyrics and hear the melody. So many stories, so much truth.

Finding my tune

Angels

Do you believe in angels?

I have really gone back and forth on this for sometime. I know the reality and I also understand the fantasy. There is a certain something to believing but in actuality for me, I kind of do. I look back on my life and the vast amount of situations I have been in and someone has been looking after me. It's a strange thing, especially when it comes to dreams. What prompts them?

This holiday season came with so many weird dreams. My grandpa, Benjamin Lee, died many years back at Christmas. I was working at HSN at the time, overnights, so I slept a lot in my living room chair. I woke up, it was maybe 2am and I swear he was leaning on my kitchen table staring at me. I still remember that. He was a great man.

Since my parents passed, I wonder sometimes. I do feel they are with me and maybe have yelled at me a time or two.

Ok at the possibility of sounding crazy, I am choosing to believe in angels. God has always put people in my life that have saved me, changed me and just made me a better person.

There are angels amoung us for sure.

FAST. Stroke Warning Signs

January has been a rough month for me for the past 5 years. I don't know what it is but my body just goes haywire every time a new year begins. It may be the stress after the holiday or just that time of year but it always is gloomy. I am working on changing that this year and so far so good. It was a year ago January 18 that I had a stroke and ended up in the ICU for a week. I had a heart attack and surgery in 2010 so I really did not see this coming. For me I have bad jeans, literally. My parents both died at 54 and 56 so that genetic component has been a bear for me. On top of that my mom was adopted so understanding fully my family history comes with some challenges.

I have to say it was scarier than my heart attack. After my heart attack, I was in the ICU awaiting surgery but I felt fine. My troponin levels keep going up but I felt fine. The stroke was very different. I had had a few TIA's ( pay attention to warning signs) but ignored the obvious. When I had the stroke, I lost my ability to talk, my vision went crazy and I just felt out of control of my own outcome. I was so scared more for my family.

Throughout the year I received therapy. I admit I still have not been the best in my recovery and I still limp and my vision has taken a toll. I am so blessed to be ok. The good and the bad is through my heart disease, stroke, bruising, raynauds syndrome, multiple pregnancy losses, prematurity and  eye disease, they think they found the cause which is vascular. Can this be fixed, no but managed yes.

The reason for this post is because I was stupid but thanks to a great friend, Juliana Mckee and my family, I survived BUT the important thing to remember is to act FAST if you think you are having a stroke and to realize that 911 can be your friend. Hey, I did get a new door out of it but I am forever blessed and grateful for true friends.

I am young, I didn't fit any mold for Cardiovascular Disease or stroke. No one is immune so please learn more at www.heart.org!

More info:

Stroke can and often does occur without warning, and its effects can be devastating: Stroke is the fourth-leading cause of death in the United States and a leading cause of disability. For people experiencing the symptoms of stroke time is of the essence. The symptoms of stroke need to be recognized quickly and immediate action needs to be taken. Learn all about F.A.S.T., which is the acronym being promoted through the AHA/ASA's Together to End Stroke initiative as an easy way to remember the sudden signs of stroke. The F stands for face drooping, the A for arm weakness and the S for speech difficulty, all of which are major symptoms of stroke. The T stands for time, which emphasizes the severity of the situation and indicates the need to immediately call 911.

The Lollipop Kids Foundation

I have been involved with a lot of organizations and to be honest, it is life circumstances that have introduced me to them. Since the birth of my son, 5 years ago, we have been blessed to have resources to obtain great healthcare, supplies and medical equipment. Most people who have children with disabilities do not have these resources. They are costly and most are not covered fully by insurance. I wanted to donated Carters equipment as he was outgrowing them and was guided to an amazing organization called the Lollipop Kids Foundation. http://lollipopkidsfoundation.org. It was started by a lady name Debbie Sahlin who knows first hand the struggles that families go through. This is a non-profit that I am proud to work with and I hope you will take the time to visit the website and learn more. Volunteers, support and donations are always needed. We all can make a difference in someone life everyday. To me, it starts with the children. I love my little man (and his sister:)  and so proud of his journey. As a Mom and I think most can understand this, I will do whatever I can to help him hit those milestones.  He has already exceeded expectations and will continue to do so. Its foundations like the Lollipop that changes lives and gives the children the chance to thrive.

 Carter

 

Mission

Children with disabilities have the right to be given opportunities that allow them to live to their fullest potential. Too often, parents raising these children feel isolated socially and burdened financially, emotionally and physically. They are forced to make hard decisions and sacrifice substantially in areas that most could not imagine. The Lollipop Kids Foundation exists to combat social stigmas, ease the financial burden placed on these families, offer emotional support and provide a brief respite so that every child with a disability has access to a hope and a future.

Guiding Principles

Love
Love encourages and inspires. Children with disabilities encounter prejudice at every turn. Love empathizes and resists the desire to look away. The Lollipop Kids Foundation believes that love discovers a passion within that fosters understanding and creates a desire to help.
Faith
Faith implies complete trust. Every child with a disability must have faith in himself or herself. Faith strengthens self-esteem and confidence. The Lollipop Kids Foundation believes by building the faith children with disabilities have in themselves and their environment, we empower them to prosper.
Hope
Without love and faith, there is no hope. Hope sustains and motivates, it enriches outcomes. Hope helps each one of us say no to despair and yes to endurance. The Lollipop Kids Foundation wants to give each child with a disability the gift of hope.

A disability does not make you disabled

Judgment is hard. Its hard to receive but yet so free to be given. I see it everyday. It was hard for me to accept that I have a child with special needs. As I compare, even as a Mother, its hard not to sit back and judge myself. What did I do? How did I cause this? The worst for me is what others think or say. Its been hard and I wont lie. I sit back and look at other children, including my own, and just wonder why. With Carter it was 165 days in the NICU and 3 years of question with his chronic lung disease and Cerebral Palsy. He is still gtube fed but is eating. This has to do with his lungs but after 3 years of not being allowed to eat, eating has also become a challenge. I wish I had this problem.

Carter turned five on January 2nd and pardon the crazy Mom bragging but is amazing. He breathes room air, is physically beautiful and can trash my house with the best of any 5 year old. He is truly amazing.

This brings me to judgment. I am somewhat jaded because we fought so hard for Carter after 4 previous losses. I use to walk in the mall with him and have STRANGERS question why he still has a binky or may have been leaning over to one side. (he does not do this anymore) However, I just reflected back on an amazing person in my life when I wanted to yell at them and say, "YOU DON'T KNOW MY LIFE". I did want to follow up with some creative vocalizations but people can and have been stupid. They look, they judge, they assume. Yes, on any given Sunday, I have had my babies in a bar:) Football and we walk but sometime you just need to take a walk.

  The one thing I always say to my son is that you may have some disabilities but you are far from disabled. I will always believe and never judge. After all, you don't know his life.

2014, hello maybe?

I have learned in my years that expect the unexpected. 2013 has been an interesting year. I use to say 13 was my lucky number, maybe not! I can't say it was completely unlucky. My husband came home from Afghanistan after his 10th deployment. When he was gone, much like car problems, everything happened. I have recovered from my stroke and my family got me through. I think every week someone was here. My eyes are going. Then in September, we had a miracle. I love my family.

One of my highlights was visiting my family in SC over thanksgiving. The last time I saw many of them was my Daddy's funeral and unfortunately because my Grandpa passed the same night as my Mom in 2004, ironic, no one could make it. Past the little pity I just had, we Pembertons rallied. I think it's in our genes. I am so proud of my cousins, Uncle, Nephew, Brother and Memaw. It's the land of Doctors, Nurses, Businessmen/women , military and  I frankly felt a little unaccomplished. So proud. We Moms rock too! My Aunt Robyn has done so much for the family and her children reflect everything that she gives.

So what's for me in 2014? Let's plan for a great January first. I grew a lot this year, all over :(, but I am starting over. Fresh.

Putting this out there...If I did anything to hurt you, I am sorry. I am so not perfect. Yes, my apologies have been blatantly turned down even when I have no clue what I am apologizing for but it's life. I am still sorry.

I believe in this Christmas season in love! laughter! faith and hope. I pray for us all great health in 2014.

Time to celebrate. Let the New Year begin!

My life long wish

The holidays are always filled with emotions. I am beyond blessed that we spent Thanksgiving with 18 members of my family.  This included my Memaw.  Dec 18 is her birthday and Dec 22 would have been my Moms.

This made me think of my favorite Christmas movie, " Miracle on 34th Street". Yes, before "Hostages" Dillon McDermott was so nice. Lol. ( I also have all the earlier versions!) 

So I have made my own Christmas list.  I also love Amy Grant so I am borrowing my Grownup. Christmas list from her

Love

Laughter

Acceptance

Understanding

Forgiveness

Understanding 

And maybe we van throw in a Gibson, some 3 carrot ( lol) earrings and three chords and the truth for good measure.

Happy Happy Happy Holidays! 

Be blessed

D

Heart Walk 2013

I have been so blessed to work for the American Heart Association and volunteer for them also. 13 years and many events later, I volunteered at Heart walk yesterday! The great part about being a survivor is when develop a family within it. You're the Cure is an arm of that. A rather hefty one that does so much on the hill so I was thrilled to see Jennifer Witten yesterday. I also got to catch up with one of my favorite people, fellow survivor and amazing fundraiser, Senator Frank Shore. He calls me his QUEEN of Hearts. How can I not love that!

The GWR Heart walk raised close to 1.3 million this year and the walk on the National Mall was amazing. I was really excited for the puppy depot!

Beautiful day, I survived the Metro  and got to enjoy catching up with some very special people.

Every step matters!

Here's to your heart!

Mrs Maryland America 2014

 I have done pageants for a while and I always find them to be a point of self discovery. Sometimes, not always good but I learn a lot each time and mostly about myself. I competed in Mrs Maryland America 2014 last weekend and I had a great time. I went back and forth on whether or not I should but at the end of the day I just decided to make a girls weekend out of it so I did. On Friday, Cara Cole, another military spouse, and I hit the road and checked into the hotel. Jessica, another contestant also shared our room and it reminded me a bit of a college day slumber party. We all three have children so it was Mom's night out!

Orientation was fun and we gave out our contestants gifts. I loved all of mine and a common theme was the gift of wine and some homemade(thank you Alyssa!). Thank you to SKINN Cosmetics for supplying my gifts of beauty!!!! All of the ladies received a sponsored gift by SKINN. (www.skinncosmetics.com).

We stayed up after orientation, rehearsal and dinner until 1am in the morning just talking! We may have cracked into some wine too. It was so much fun. The next day was rehearsal, interview and finals. All of the ladies rocked it and when top 5 was called, I was honored to be among them!

I placed second runner up, photogenic winner and interview winner. I was so happy and still am! Congrats to Zereana Jess Huff, your new Mrs Maryland America 2014. She is an Ovarian Cancer Survivor, a beautiful lady and will rock it at Mrs America.

I have to say the ladies were ALL just amazing. Thank you for the smiles!

My heart smiles because of you~

Deanna Maria

 

Legacy

Legacy precedes us. Some in greatness and some in shame. We cant shape those before us but sometimes we sit in admiration. I am a Pemberton. What does that mean? I am not sure at times except we don't invest well. We are all very smart. A history of doctors, chemist and amazing people.

So as history is told, and before anyone gets confused my family lost it all, but yes we are the Pemberton's that created Coca Cola. I personally lived in Atlanta until 7th grade. OK so it was a drug when it was created but I am still addicted.

I wish I had that genius gene but as I always talk so negative at times, we did make history so lets have a Coke and a smile:)

Bella's Story

Bella

 

Isabella Lillian Linz

Born April 19, 2006

At Portsmouth Naval Hospital

 

Bella became very ill her second of life and was given a diagnosis

of VLCAD by the Virginia State Newborn Screen

 

For more information contact:

Carrie & Tom Linz

814-573-1636

Carrielinz@hotmail.com

 

A muscle biopsy determined Bella has VLCAD-C the most severe form of VLCAD

Very Long Chain Acyl-CoA Dehydrogenase Deficiency - VLCAD

VLCAD deficiency is a rare genetic inherited fatty-acid oxidation disorder that is characterized by cardiomyopathy, fatty liver, skeletal myopathy, pericardial effusions, ventricular arrhythmias, and sudden death. The condition prevents the body from converting certain fats to energy, particularly during periods without food (fasting). People with this condition have inadequate levels of an enzyme that metabolizes a group of fats called very long-chain fatty acids. These children are also at risk of serious complications such as liver abnormalities and life-threatening heart problems.

1.	Avoid going a long time without food Children with VLCAD must eat frequently to maintain their energy level and prevent a metabolic crisis. Bella requires a G-tube to receive calories throughout the night while sleeping.
2.	Diet A low fat, high carbohydrate, high protein diet is recommended. Carbohydrates give the body many types of sugar that can be used as energy. Most food in the diet should be carbohydrates (bread, pasta, fruit, etc.) and protein (lean meat and low-fat dairy foods).
3.	MCT oil and L-carnitine Medium Chain Triglyceride oil (MCT oil) is often used as part of the food plan for people with VLCAD. This special oil has medium chain fatty acids that can be used in small amounts for energy.  Some children may be helped by taking L-carnitine. This is a safe and natural substance that helps the body make energy. Bella is currently participating in a FDA trial of Triheptanoin. Triheptanoin is a triglyceride that is composed of three seven-carbon fatty acids. These odd-carbon fatty acids are able to provide anaplerotic substrates for the TCA cycle.
4.	Call your doctor at the start of any illness Immediate medical assistance should be sought if the following symptoms are observed: poor appetite        low energy        vomiting            Reddish-brown urine        a fever       muscle aches & weakness Children with VLCAD need to eat extra starchy food and drink more fluids during any illness - even if they may not feel hungry - or they could develop hypoglycemia or a metabolic crisis. When they become sick, children with VLCAD often need to be treated in the hospital to prevent serious health problems.
5.	Avoid prolonged exercise or exertion. Long periods of exercise can also trigger symptoms. If muscle symptoms happen, prompt treatment is needed to prevent kidney damage. Children with muscle symptoms should: drink fluids right away eat something starchy or sugary get to a hospital for treatment VLCAD Children can commonly experience episodes of illness called metabolic “crises”, periods when their bodies become toxic, and break down muscle.  Once started, metabolic crises usually cannot be reversed w/o medical intervention.  Early signs of crises: Extreme lethargy, Behavior changes/Irritable moods & poor appetite. Bella is prone to Rhabdomyolysis , a condition in which muscle tissue breaks down rapidly.  Breakdown products of muscle cells are released into the bloodstream; some of these, such as the protein myoglobin, are harmful to the kidneys and may lead to kidney failure.  Some symptoms may include muscle pains, vomiting and confusion.   The mainstay of treatment is generous quantities of intravenous fluids. Bella also struggles with increased CPK.  Creatine phosphokinase (CPK) is an enzyme that can be found in the heart, brain and skeletal muscle. A high level of CPK is not a good sign and is an indicator of heart attacks, strokes and other serious diseases. A level above 250 is considered abnormal. Her highest CPK was over 69,000. The 2013 has been a difficult year for Bella.  She has been in the hospital 8 times already this year.  Bella enjoys being as active as her body allows, but unfortunately her specialists have had to put her on limited activity.  Although Bella qualified for States in Gymnastics in early 2013, due to her VLCAD and increased hospital stays, the doctors were not able to let her compete and have told Bella as of now she can no longer participate in Gymnastics.  Bella is scheduled to return to Oregon Health and Science University Hospital for more research testing.  Doctors are hoping to learn valuable information from her to benefit children in the future.  After her stay in Oregon, Bella will return to Pittsburgh Children’s hospital for more testing and an opportunity to participate in another form of treatment.

 

 

                                                                

Additional Research or Information:

www.fodsupport.org

www.gemssforschools.org/conditions/vlcad

www.newbornscreening.info/Parents/fattyaciddisorders/VLCAD

 

 

 

 

 

 

 

 

 

 

 

Carters Story

Its taken me 4 and a half years to really grasp all of this. I always wanted to seem strong, ok, immortal. Its been told that God does not give you anything you can't handle. I've had a lot of one on one internal conversations and sometimes feel like there just isn't an answer. I was not "young" when Andy and I married. Lord knows when you hit 30 there is a flashing light that goes off when you go into the OB GYN office that screams...halt...rotten eggs...warning warning! I find it interesting that we spend so much time early on trying not to get preggers and then when you want to its planned, positioned :), prayed for and then it still does not happen or there are complications. What is up with that???????

Past the I do's, we never tried not to get pregnant. Granted a few year long deployments caused some complications, something's the USPS probably does not want to ship, we got pregnant. A few times. Actually 4. Each time ,always with a bad outcome. Sorry International (actually not:) but it seemed like Chitown was our lucky town. Ironic. It did give me the biggest title of all, Mom. My prince!

When we found out we were expecting again, honestly I just took it as great, here we go again. We did all the genetic testing, we prayed, we hoped and every time we went in they did an ultrasound. I was high risk so it just was the process. I got use to the tech walking out and the doctor walking back in with the "I'm sorry" look. We had been told I may never carry.

I went through a breast cancer scare in 2004, I was not 20, we had already had multiple losses. This was before my heart attack and stent placement. Stress and genetics. I am a faulty vessel.  

As the weeks passed, we just continued to pray and hope. My first scare was Halloween 2008. I went to NNMC because I felt pressure. I did not look pregnant at all and the ER doc thought I was crazy but after verification he was like well you are pregnant, no kidding, but I'm sure your just over sensitive. This coming from Doggie Houser.  So we pushed forward. We received a call on the way to PA for Thanksgiving that it was a boy (amniotic fluid from genetic testing. My niece has vcad). It looked promising.

We went back to PA for Christmas and New Years. At this point I was 21 weeks (ish). I am a stress person and just was. Driving back to Maryland, again, I just felt to pressure. We went to National Naval Medical Center upon arrival. I remember sitting there. Nervous. They took me back and I was dilated. I was not allowed to get up from the bed. At that point life changed forever.

I sat there, or laid in my new upside down elevated position on Magnesium and meds for Carters lungs just panicked. I was alone. Andy was there but in and out and I was just scared out of my mind.

First came the Grimm reapers, the neonatologist, who tell you nothing but every bad acronym, how your child will never survive, how you should have a c-section because he's not viable and by the way, please sign this DNR. Really....NO.

Its so easy in the med field to just see a patient and not see a name. There was a heart beat. I would lay there for as long as I needed. At this point my head was in dreadlocks because, of course, I was allergic to the magnesium and I was scratching so much.

I was there for a few days and for whatever reason, still unknown, they took us off the monitor. Andy went home to take the pups out. I was looking for him in my drugged state and went to try to find him on the pull out bed next to mine and laid down. The nurse woke me up and Andy had just come back. It was that point that it all just changed. Something was wrong.

Besides the immense pain, what I remember is the doctor telling me not to push and you better tell them to run. Them being the neonatologist. We didn't sign the DNR and said to them if he comes out fighting, fight for him. Carter arrived at 3:18am weighing 1 lb 6 oz and 12 inches on January 2, 2009. 23 weeks and when they were intubating him, he pinched them. My fighter.

I love my husband and people do the best they can do but it was a lonely time. I just missed my parents but thank goodness for the family I do have.

Carter spent 165 days in the NICU. I was there everyday. Many times we were told he wont make it through the night, especially after his heart surgery. Three particular times were just horrible 48 hours.

I always told him, you fight for me I will ALWAYS FIGHT FOR YOU. We sang way to much to him LOL and yes a Steeler dressed SMURF was always at his bedside.

We were told Carter would be non responsive, blind, on a trach and basically in a vegetative state for his whole life.

Carter had heart surgery, ROP surgery, a nissen, Gtube placement, laryngeal clef repair, chronic lung disease, cerebral palsy, hydrocephalus and is legally blind.

Today he breathes room air, can see with ever so cute glasses, does not have a shunt, is eating food, walks with a walker like a mad man and just said Momma.
MOMMA

My heart took a toll and gained so much in the process. He is my heart beat.


Miracles happen

YOU'RE THE CURE!

Building healthier lives, free of heart disease and stroke, is up to all of us. That's why I just took action on an important advocacy alert from You're the Cure, the American Heart Association's grassroots community. Will you add your voice to the fight against our nation's No. 1 and No. 4 killers too? Thanks

Log onto: www.yourethecure.org

www.heart.org

Take action and lets save lives!

So blessed to be able to advocate for such an amazing cause!

International 2013

Well I have finally arrived home and unpacked. It was an amazing 7 year journey which has come with a lot of emotions over the years. Yes, I have carried a baby and baby weight, hey it is a Mrs pageant and also been a nice size zero on other years. Its been a journey. I have learned a lot of lessons. First and foremost, never post on VOY or sign your name even when just defending yourself. I new when a judge said to me that she was not going to ask me anything about my platform because she was going to assume it was true and proceeded to ask me what movie we watched, well if there was a mulligan in pageantry, that was it. You do put your self out there to be judged so the blame I will own. I did compete against two of the judges previously so their opinions were already established. Regardless, I had an amazing time and met so many new friends. You can't control 5 people you can only control yourself. I did my best and I would do it all over again minus my rants. Yep, I will own that too. I just stand up for what I believe in and who I believe in. I have been accused of just about everything from running Voy myself to faking a heart attack to win. Really, this is true and very sad. With all of that being said, I truly can't say that the outcome would have been any different with different judges or that anyone that placed did not deserve their placement. They did. There were 70 plus of us and each lady was so impressive, beautiful, platform driven and fit. I pretty much called Amy to win but only because I know her and she is the package. Photogenic I will never be nor will I be the fitness winner and well she won every preliminary. She is also extremely well spoken. I am ok with the outcome. The International system is one that will always be a part of my heart and their queens do amazing things. The staff make it even more special!

I am moving forward and looking up. Your destiny is determined by your actions and reactions. Moving forward with happy but boy I wish I could rewind the last 8 mos.

Congrats to all of the ladies. International Love should be a song for the production crew in the future. Truly and forever.

Lawyers Have Heart

I was so honored to have been asked to sing the National Anthem last weekend in Georgetown. Their were roughly 10K participants so was I shaking, YES! I remembered the words, thank goodness but at 6:55 am, I am not sure they would book me for the Super bowl just yet.

I had such a great morning with Shannon Obrien, Miss Maryland International 2013, as we cheered on those that took on such a great challenge for a great cause. Lindsey Difaszio with AHA did a great job with the event.

Forever blessed!

D

CPR Training and a fun day with the American Heart Association! Come join us!

American Heart Association and Partners Want To Teach You How to Save Lives with CPR
(Washington, DC) — Got a minute? Then you can learn how to help save someone’s life.  During National CPR Week, the American Heart Association, DC Fire and EMS, All Heart Training, and WASH-FM  with support from DC City Council will hold a press conference and a free hands-only CPR training  to raise awareness about the critical importance of learning CPR.
Each participant in the training will receive a Family & Friends® CPR Anytime® Personal Learning Program that allows anyone to learn the core skills of CPR in just 20 minutes using their own personal kit. The kit contains everything needed to learn basic CPR, AED skills and choking relief anywhere, from the comfort of your home to a large group setting.  The American Heart Association is also seeking people to join our CPR Dance!

WASH-FM personalities Loo Katz and Chilli Amar will be on hand to emcee the event.
What: DC CPR Training Day and Press Conference
When: Thursday, June 6
Where: Freedom Plaza, Washington DC 20004

Agenda:
Freedom Plaza CPR Training
11:00am: Registration-Receive Kit – participants in the FREE CPR training must sign up for the Family & Friends® CPR Anytime® kits either onsite or through Evenbrite at: http://flashmobcprdc.eventbrite.com
11:45am: First CPR Training Session  with DC Fire and EMS
12:15pm: Surprise Entertainment - Know disco? You can save a life if you do. Get down to the song “Stayin’ Alive” and learn how to save a life! Preregister at: http://flashmobcprdc.eventbrite.com
12:30pm: Second CPR Training Session with DC Fire and EMS
1:00pm: Event end

Why: Cardiac arrests are more common than you think, and they can happen to anyone at any time.  Nearly 300,000 out-of-hospital sudden cardiac arrests occur annually, and 80 percent of cardiac arrests occur at home.
·         Many victims appear healthy with no known heart disease or other risk factors.
·         Sudden cardiac arrest is not the same as a heart attack.
·         Sudden cardiac arrest occurs when electrical impulses in the heart become rapid or chaotic, which causes the heart to suddenly stop beating.
·         A heart attack occurs when the blood supply to part of the heart muscle is blocked. A heart attack may cause cardiac arrest.

Know disco? You can save a life if you do. If you see a teen or adult collapse, call 9-1-1 and push hard and fast in the center of the chest to the beat of the classic disco song “Stayin’ Alive.”

The American Heart Association is urging people to take 60 seconds to watch a Hands-Only CPR instructional video so they are equipped to act in a cardiac emergency. The video, which can be viewed at www.andsonlycpr.org  teaches the simple steps to help an adult who is in cardiac arrest. In fact, a recent study shows that just watching a short instructional CPR video greatly increases the chances that bystanders will attempt CPR.

Taking the time to watch the video is important because 70 percent of Americans have never been trained in CPR or their training has significantly lapsed. And when people lack confidence and knowledge of CPR, the odds of survival get worse for victims of cardiac arrest: Less than one-third of those victims get CPR from bystanders.

Hands-Only CPR involves two simple steps: 1. Call 9-1-1 and 2. Push hard and fast on the center of the chest until professional help arrives. The American Heart Association has endorsed Hands-Only CPR as a treatment for adult cardiac arrest victims since 2008, and studies have shown it is as effective as CPR with breaths. In addition, people who watch a brief Hands-Only CPR training video are significantly more likely to attempt CPR, according to a recent study published in the association’s scientific journal Circulation.

Hands-Only CPR is recommended for adults who suffer a cardiac arrest at home, at work or in another public location. Children under eight years old still need full CPR with chest compressions and breaths since the cause of their cardiac arrest is typically respiratory-related. For more information about CPR Week or Hands-Only CPR, visit www.handsonlycpr.org.
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About the American Heart Association
The American Heart Association is devoted to saving people from heart disease and stroke – America’s No. 1 and No. 3 killers. We team with millions of volunteers to fund innovative research, fight for stronger public health policies, and provide lifesaving tools and information to prevent and treat these diseases. The Dallas-based association is the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke. To learn more or join us, call 1-800-AHA-USA1 or any of our offices around the country, or visit heart.org.

American Heart Associations Golf event and 1st annual Women's symposium

Monday was a fun and rainy day! I really enjoyed spending the day at the Woodmont Country Club on behalf of the American Heart Association. It started early but the champion golfers did to let the mist of Mother Nature stop them from golfing for a great cause! I have been involved with this event for a few years but the big change was the 1st annual Women's symposium that was held in conjunction. ( we got to stay dry:).

There were many sessions on cooking, Zumba (done by the amazing Debi Bevins), nutrition, CPR and so much more. We were then treated to a heart healthy lunch. I have to admit, I am not a "foodie" but the raspberry sherbet was gone when I left:). Hey it is heart healthy! Michelle A Albert, MD, MPH, Professor and Chief of Cardiology at Howard University, gave an great lecture on the effects of stress and heart health. I definately paid attention!

We also heard an amazing testimonial from a fellow survivor, Andrea Woogsam.

What a great day for a great cause.

Here's to your heart!