Chic-Fil-A Supports a Great Cause

Just a quick note to say thanks to the Hedgesville Elementary School PTO and Chic-Fil-A in Martinsburg. Looked like a very busy 3 hours so I am excited to forward a check on to further research! I also learned that there is another little boy in 1st grade at HES that has Chiari so Matthew will now have someone he can relate to! More on that later, today is my kickoff day for planning the walk in September.

What a Wild Wonderful Experience!!!

I can't wait to get the DVD to hear my little Lauren screaming "Yay Mommy!!!"

I was named 4th runner up and also won photogenic, I was really thrilled to do this well. I certainly learned alot about myself and the International system. Misty McMinn took the crown and she is a beautiful person inside and out! She and her husband Scott will represent the state of West Virginia so well!

Madison was crowned Miss West Virginia Princess International 2009! So she will have a busy year of making appearances! Every little girl should feel the thrill of having that crown placed on her head! I am proud of her.

I met some amazing ladies and it is great to know that at the end of the day, we are all making a difference in our communities.

Getting ready for a Beautiful drive to Charleston...

I have been in anticipation of this pageant for about 6 months now and I have learned alot about myself. A great lesson I have learned (and my Mom helped!) is to be proud of all that I have accomplished in a short time, in my short 34 years here! My family has taught me to stop and enjoy the moment, to celebrate now, celebrate where I am this very day.

So I have high ambition for myself as I go this weekend to show the state of West Virginia and 5 judges who I am and what I am all about, I am thrilled that this may be a new chapter for Chiari Awareness but whether or not I take the title, I will always be an advocate for this cause, I will always be the best Mom I can be and I will always serve my profession and my country to the best of my abilities and thank God for the many blessings I have before me!

"Showcasing The Accomplishments of Today's Married Women"... what a great way to celebrate!

What we take for granted...

Just a note tonight as I think of how festive folks around the office were today. I know, just St. Patty's Day but nonetheless another time-honored tradition of sporting some shade of green to avoid the little pinch!

No matter how large or small our traditions, holidays or customs here in the United States, we are lucky (no pun intended)! We are able to freely celebrate and express our views in this country. We have servicemen overseas and all over the world who have intentionally left this freedom behind in order to defend it, protect it, share a little of it with others...

Although my work has taken me to the Middle East, I was able to return home in a matter of a week or so. I do not consider myself to be part of this elite group of folks. We have deployed servicemen and servicewomen who are on missions lasting 6 months to a year in war zones, in areas of the world where they are not able to walk down the street freely and sleep at night in flack vests just to be prepared for what the enemy might have in store. Many return for multiple tours of duty.

I am so proud to provide support to our Armed Forces. I do not like war, actually I cannot stand it however I, like most, LOVE my freedom. Political views are just that. The bottom line for me is that we have our brothers, sisters, fathers, mothers, aunts, uncles, daughters, sons, cousins, neighbors, husbands, wives fighting 24/7 in places over 6,000 miles away on foreign soil, living in unbelievable conditions and we MUST support them through our prayers, thoughts and love, whether we agree with war or not.

My last point is this, when our soldiers and civilians return home, continue the support. Understand that these folks have seen things that nobody should ever have to see and they need time to adjust and get back to living here in the states. They are coming back sometimes to uncertain conditions be it relationships, employment, family, they need time and support to adjust. I urge anyone that has a family member or friend returning from the Middle East, be supportive, offer an ear to listen, pay attention to their behaviors and if they do not seem to be getting back into life, talk with them and get the help they need. I know personally that the Department of the Army has numerous resources to help.

Please remember those that are sacrificing their lives so that we may continue to live as we do.

God Bless our Troops, Military Civilians and Civilian Contractors serving in the Global War on Terrorism, bring them home soon and safe.

One of the Best - Right in our Backyard!

I have been working for a while now to get the support from, in my opinion, one of the most valuable state assets and that is from our healthcare resources with West Virginia University. The Robert C. Byrd Health Sciences Center is located at WVU and provides education and research to our health care professionals of today and tomorrow. This institution has the ability to communicate massive amounts of information to students, faculty, alumni and residents of the state of West Virginia as well as those who utilize the services of these facilities from outside our state.

With a list of medical services that run the gammett, WVU Hospitals and associated facilities should be used as an outlet for Awareness and Education of not only Chiari but also other conditions that are not well known and easily diagnosed.

I hope to partner with the administration in charge of information and begin a campaign to distribute materials on this condition in a manner that will be effective, efficient and reach the masses.

Conquer Chiari - Research Grants 2009

I think it is wonderful to see this! This is progress! Not only are we funding research to progress our knowledge of this condition and better the quality of medical care and life for Chiari patients, but hey, we are also stimulating the economy, right?

This call for proposals was published in January and proposals are due at the end of this month. This is exciting! The monetary gifts from so many CAN and WILL make a difference!

He is not just a "Difficult Child" - Oppositional Defiant Disorder

I wanted to share one of the not so successful parts of Matthew's success story thus far in fighting Chiari. Due to the disruption in his developement between his 2nd and 3rd year of life, he missed the critical forming of something we take for granted, the art of reasoning and accepting authority. The text book definition of ODD:

"Oppositional Defiant Disorder is a diagnosed condition of negativistic, hostile and defiant behavior that includes symptoms of low frustration tolerance, argumentativeness, defiance, noncompliance, oppositionality, provocation, blaming, spitefulness, irritability, resentment, anger or vindictiveness. "

My son can be the sweetest, most thoughtful 7 year old, he frequently is given 2nd and 3rd grade level "busy" work in class because he finishes his work quickly. He is a bright and active little boy.

But when Matt is down, he is down. When Matt is not ready to accept the authority before him, the authority he calls Mommy and in some cases Teacher, it is a never ending battle to get through to him. I accept my challenges as a parent, noone ever said it would be easy and I never had a glorified view of being a Mommy, just enjoyed my little taste of heaven with the hugs and the great feeling when I have taught them something. With Matthew, I have to take each day as it comes. I never wanted to treat my children differently except to celebrate their uniqueness, that is something to be thankful for, they are all their own person. I have to handle Matthew differently, I have to be very cognitive of where he is emotionally throughout the day, focusing on the positive.

I believe in discipline, children need discipline. In my other children, discipline is truly a process. We recognize the behavior, we discuss what was wrong, there is punishment to fit and then we get back to living. For Matthew, discipline tends to start a downward spiral that does not end well. It is very tiring for myself, my husband, Matthew, really the entire family. I think in some ways I am as hard headed as Matthew in that I will not let an opportunity go by to break through just a small amount of that stubborn shell, to hopefully teach my son that authority is not a bad thing, we are here to help. Matthew knows and recognizes right and wrong however to be told that he was wrong is the struggle we go through, I can see it in his eyes, his face, he knows right from wrong, to get him to admit when he has done wrong is something else.

As our family matures, as Matthew grows, I look forward to working with other families affected by this "biproduct" of an early Chiari Malformation. This condition presents it's own set of challenges on top of those we face with children having a Chiari, sharing our life lessons will only further our ability as parents to bring our children up in a healthy manner.

Scoliosis and Chiari

As a parent, I enjoy hearing how my children are growing each time we go to the pediatrician for checkups. Except for Matthew's failing health early in life due to the Chiari Malformation, the experience has always been positive, they are getting taller and gaining weight.

I attended elementary school in a small town of about 350 people. The school housed all grades, Kindergarten through 12th. In the 4th grade we had medical evaluations to test our vision, hearing, motor skills, bone density, etc. I clearly remember them also doing a screening on each child for Scoliosis. I was sent home with a note saying I had a very mild case of this condition.

I have not really even thought about that "diagnosis" again until last year when I had a full physical. So I step on the scale, my weight loss journey continues... But then it was time to measure my height, I heard her say 5' even. I stepped down shaking my head and told her I am 5'2" so she agreed to check again, 5' even. I wanted to argue but had nothing but a WV driver's license to explain to this nurse that I have been 5'2" since high school.

Needless to say, I was stuck on that point but proceeded with the rest of the physical waiting for the Doctor to pause so that I could ask what this meant. He seemed shocked too, 2" is alot of difference. He checked my spine and knew immediately what has happened.

I have Scoliosis. Over the last several years I have slowly lost 2" in height. So, knowing the condition my son has, I started searching and sure enough there is a link between Scoliosis and Chiari.

Now, we know I have Scoliosis and we know that Matthew has a Chiari Malformation however it is still not known just how they are linked. So far, Matthew has not been diagnosed with Scoliosis. The exact cause of Chiari is still not known but there is a strong opinion that it is congenital. When Matthew was first diagnosed I asked the neurologist if it was wise/necessary to have myself, other family members and children scanned. Because I had become so familiar with the presenting symptoms of Chiari, I personally could rule all of us out, at least at the present time and the neurologist's opinion was to only test if the symptoms were there. However, discovering this link between Scoliosis and Chiari recently, I am again contemplating scans for the family. This information would be dual purposed, to ease my mind and to present the findings for further research to either support or refute the connection of these conditions to genetics.

Everyday I learn more about Matthew's condition. We have so much more research to do and we must press on to raise funding, awareness and education for this condition.

Please Pray for a Family Affected by Cancer

My heart is so heavy and I know the only answer lies with God, he is in control.

A friend of mine and her family are going through a very tough time right now. Her son is 13 and has had cancer for 10 years. They have been through all of the ups and downs and she has worked so hard to help her son fight this disease and all of the associated health problems. She has a belief in God that is unparalleled. Her son is at Hopkins now and it appears that there is nothing more they can do for him other than to make him comfortable.

Please keep her, her family and all of the families and children that must endure conditions such as cancer in your prayers. Pray for strength, hope and a cure.

Love Each Day, it truly is a gift.

Link to Chiari in Fibromyalgia Patients

Don't always judge a book by its cover, open it up, study its contents...

In my research, I have found that Chiari patients are often misdiagnosed in so many ways, one way in particular is having a condition called Fibromyalgia. What is interesting is that in more recent findings, Fibromyalgia patients, in some cases, have varying Chiari malformations causing some or all of their symptoms. Studies are out showing symptoms of patients with Fibromyalgia and found to have Chiari as well improving with the typical surgery to treat Chiari Malformation, known as decompression surgery.

I see this as yet another tool to carry in our toolbox, knowledge is power.

http://www.co-cure.org/chiari.htm

Matthew's Story and My Mission...

Conquer Chiari is a national non-profit organization and has a wonderful all-encompassing mission when it comes to Chiari Malformations.

To further my work with Chiari awareness and education I am reaching further, I truly feel that the more people my family comes in contact with the larger impact we will have and what a great thing we can accomplish if we can help others shorten the time for a proper diagnosis, assist the medical community to recognize the condition through presenting symptoms and raise some money for research in the process.

On March 21st I will pursue another dream of mine which has an even greater meaning because of the great emphasis on my platform, I will compete for the title of Mrs West Virginia International 2009. I have been quite busy over the years having a combined total of 4 children and a busy professional life. I always knew I wanted to enter pageantry again but I wanted to be fully prepared. I wanted to be in the best shape I could be in physically and I also wanted to make sure I had the time to commit for both a state and national level competition. Well in October of 2008 I felt that I was there! I am a civil engineer with a Bachelor of Science degree from Texas A&M University and in October of 2007 I recieved my Professional Engineer's license for the state of West Virginia, what a wonderful feeling that was! So this competition was the next great thing to pursue!

So read the article below, it will give you a summary about my son's condition and more about the upcoming opportunity this month! Happy reading!

God Bless.

http://www.conquerchiari.org/subs%20only/Volume%207/Issue%207(1)/Angie%20Bowers%207(1).asp

Conquer Chiari Walk Across America - September 26, 2009

On September 26th of this year people from all walks of life will join together to raise awareness, educate their community and work to raise funding for Chiari research. This event will happen all across the country and the event planning is just getting underway for the first for the Eastern Panhandle of West Virginia. For this to be a successful event, we need sponsors and walkers alike!

More to come on this event!

March 26th - Chiari Awareness night at Chic-Fil-A

Matthew and I have worked with the PTO at Hedgesville Elementary School to organize a fundraiser to benefit Conquer Chiari. Notices will go out with all students on the Friday, March 20th. Anyone who says they are with Hedgesville Elementary School that evening when ordering will have 20% of their purchase donated to Conquer Chiari.

I have to say that our family has always enjoyed Chic-Fil-A's healthy choices and family atmosphere, for them to offer fundraising such as this is another testament to the value they add to our community.

So, if you find yourself wanting to get out that evening and have a great meal and help Conquer Chiari, just remember to let them know you are their for Hedgesville Elementary School. Thanks so much!

PS Substitute the fruit cup in place of the fries, healthy choice and the fruit is yummy!

September 2009 - Chiari and Syringomyelia Awareness Month

We are thrilled that Governor Manchin has signed a proclamation naming the entire month of September as Chiari and Syringomyelia Awareness Month. The timing is perfect as I am working on the first Chiari Walk to be held in West Virginia in September. This event will take place in one day however our efforts will focus on the entire month of September for Awareness, Education and Research. I am currently talking with members of the West Virginia University Medical School - Neurology and Neurosurgery Departments in order to form a partnership for this event and many more to come.

I would like to thank the wonderful folks working in our state capitol who offered assistance in preparing the proclamation language and answering all of my questions along the way.