Monday, January 31, 2011

Turner Syndrome Awareness!


Butterflies are the symbol of HOPE for TS!

Avery and Turner Syndrome


Avery was diagnosed with TS before birth through an amniocentesis. She had a large cystic hygroma, which was supposed to prevent her from surviving, but it didn't. Because of her hygroma, Avery has a small, fatty patch of skin on the back of her neck. Now that she has grown, the patch is less noticeable. She has a low hair line, low-set ears, curved finger and toenails, and wider spaced nipples which are all traits of TS. Avery has cysts on her right kidney, and some kidney reflux, but both kidneys have functioned normally up to this point with no infection. She takes Bactrim, an antibiotic, daily to prevent infection from occurring. Avery was born with congenital heart defects- coarctation of the aorta and bicuspid aortic valve, along with some other complications. Her coarctation was repaired first, at 1 week old, and has been ballooned in the cath lab since. She also had valve replacement surgery at 7 months, to replace the abnormal valve. She takes heart medications, Digoxin-2 doses and Lasix daily.Avery is smaller than the average child. Due to her CHD, she was not on the normal growth scale until recently. Most kids with TS do not decline in growth until age 2. Avery will begin GH therapy in the upcoming summer to help her reach a more average height. She will take injections daily. Most girls with TS that do not take GH are under 5 feet tall. Due to her condition, Avery has gotten the Synagis (RSV) vaccine for the past 2 years. Avery has had no sight problems as of yet, and her hearing has not been affected. Although her hearing hasn't been affected, Avery had tubes placed in her ears to relieve fluid which could cause hearing loss. Many TS girls have problems with ear infections, but so far, Avery has only had 2. Avery sees a regular pediatrician, an opthalmologist, an endocrinologist, an ENT, a cardiologist, a geneticist, and a urologist regularly.

Those are Avery's health facts, but this is who she really is....
Avery is a happy, funny, healthy, smart, loving, beautiful, red-headed, hard-headed, energetic, dramatic, dancing, petite little girl who was created for great things! Her smile will melt your heart. She is a miracle to behold, and she lights up our life. She has strengthened our faith, shown us the meaning of endurance, and given us more happiness than we have ever felt. She is just a normal toddler, exploring, testing, growing and learning. The only difference one may notice is that she is small for her age. She has hit her milestones, and has no physical handicaps that prevent her from doing anything normal.
Avery is so much more than a child with TS, as are all the girls born with this syndrome. She is special, because she is a child of God, formed by His hand...just like every child. While things like daily GH injections, learning difficulties, further heart issues, self-esteem, and infertility seem scary at times, I know that God has her in His hands. He's done an awesome job so far, so who am I not to trust? We are blessed to have amazing doctors and nurses, who are knowledgeable, proactive, and caring. Her geneticist even stated that with all of the medical advances we have now, who knows what they will be able to do by the time she wants to have a child of her own. Avery is expected by everyone, to have a normal, healthy life, and that makes this TS/CHD and just plain old mommy happy beyond words!

Note: Just as every child is different, every child born with TS is different. There are many different ways in which a child can be affected. This is based on our personal circumstances. ♥

"Crush the Ignorance of Turner's Syndrome!"


Help celebrate TS Awareness month in February with the Turner Syndrome of the United
States' theme "Short Happens!"

What is Turner Syndrome?
Turner Syndrome is a non-inherited chromosomal condition that affects girls and women with common conditions such as:

*Delayed puberty
*Heart defects
*Puffy hands and feet
*Learning Difficulties (i.e. math) with normal intelligence
*Kidney, thyroid, and liver concerns
*Hearing loss
*Frequent ear infections
*Social difficulties
*Infertility due to nonfunctional ovaries
*Scoliosis

Plus common physical traits such as:
*Short stature
*Many moles
*Receding lower jaw
*Low-set ears
*Triangular face
*Webbed neck

Turner Syndrome can be diagnosed throughout the lifespan including adulthood with a test called a karyotype. Currently, 50% of the girls are NOT diagnosed until their pre-teen or teen years. Advances such as growth hormone and estrogen therapy have improved the lives of girls and women with TS.

***If you know a girl or woman with the above symptoms, PLEASE encourage her to get tested.***

For more information, please visit www.turnersyndrome.org

The Turner Syndrome Society creates awareness, promotes research, and provides support for all persons touched by TS. Find out more about Turner Syndrome, then tell a friend, family member, a business associate or a health care professional and help us CRUSH THE IGNORANCE OF TURNER SYNDROME. We can't do it without you!

TS Angels!




Having TS does have its difficulties, but these girls are showing the world what it means to overcome and conquer! Aren't they beautiful?

Miss Rosie


Miss Colleen


Miss Rosie F.


Miss Jennifer


Miss Avery

Heart Surgery Prayers

Prayers Please! These little ones will be undergoing surgery soon.


Ian


Sydney


Caroline

Caroline's family will be traveling with her to Pennsylvania soon for her heart surgery.

Did you know?

According to the American Academy of Pediatrics...The birth prevalence of Turner Syndrome has been estimated to be from 1 in 2000 to 1 in 5000 live births. Approximately 1% to 2% of all conceptuses have a 45,X chromosome constitution. The majority (99%) of these spontaneously abort, usually during the first trimester of pregnancy. With the more frequent use of ultra-sonography, it is recognized that some pregnancies with a fetal 45,X chromosome constitution progressing into the second trimester are associated with nuchal cysts, severe lymphedema, or hydrops fetalis. These pregnancies are associated with a high frequency of fetal death.

What a miracle you TS girls and ladies are!




Turner Syndrome Awareness Month, February 2011

Thursday, January 27, 2011

Heart Pillows



Heart pillow delivery #1 is complete! Thanks to Batson Cardiology Social Worker, Gayden Carpenter, for meeting me this morning as we were leaving the hospital after Avery's procedure. A very special thanks to all of those who bought CHH t-shirts, who donated Sharpies, who gave up time to create/stuff pillows, and who prayed for this effort. We'll be working on this continually, so if anyone would like to donate time or funds, we'd be very grateful! God bless! Megan Bell

Coming up...Disciple Now Mission Project, Quest Blanket Project, and more pillows!

Monday, January 17, 2011

Heart Pillows for Heart Patients!


The Cross Healed Hearts Team has been busy creating heart "cough" pillows for Blair E. Batson Children's Hospital! I had NO idea how this would all happen when God first laid it on my heart, but he has not only provided funding, but very special people with a heart for him to bring it all together. When I have gotten overwhelmed or discouraged, He has shown me that it isn't about me, its about Him and His glory. If only one child feels comfort from a pillow, one parent finds peace or helpful information from the blog, or most importantly, if one heart turns to Him in time of need, my job is complete. If you would like to help in future pillow or blanket projects, or would like to donate material or funds to purchase material, please contact Megan at crosshealedhearts@yahoo.com!





















Heart hugs and special thanks to Judy Simmons, Madelynne Gordon, Mary-Ashlynne Gordon, Linda Turner,Rebecca Beauman, Carolyn Justice, Laura Beauman, Barbara Willingham of Willingham's Gifts, and Judy Busby of Fabs and More!!!

Helpful Links!

These are also posted on the sidebar! Thank you Kristi Pena!


provides FREE super hero capes to children with congenital heart defects, request one for your heart hero now!
http://www.supportheartheroes.com/

Icing Smiles is a non profit organization that provides custom celebration cakes and other treats to families impacted by critical illness of a child.
http://www.icingsmiles.org/Site/Welcome.html

The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates uplifting, personalized songs for children and teens struggling witha life-threatening illness or lifetime disability--free of charge.

The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates uplifting, personalized songs for children and teens struggling witha life-threatening illness or lifetime disability--free of charge
http://www.songsoflove.org/

Many children, by no fault of their own, are in need of help each and every day. They pray daily for a healthier life. The mission of the Prayer Child Foundation is to have a hand in answering their prayers and helping these children have the joys of a normal childhood
http://www.prayerchild.org/index.html

The Program is a resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path
http://www.beadsofcourage.org/

http://www.congenitalheartdefects.com/resources.html

Find educational consultants, psychologists, educational diagnosticians, health care providers, academic therapists, tutors, speech language therapists, occupational therapists, coaches, advocates, and attorneys for children with disabilities on the Yellow Pages for Kids for your state.
http://www.yellowpagesforkids.com/help/ms.htm

You will also find special education schools, learning centers, treatment programs, parent groups, respite care, community centers, grassroots organizations, and government programs for children with disabilities


http://www.uhccf.org/apply.html
The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This “support” is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans

http://www.aubreyrose.org/
Grants available to assists with medical bills not covered by Insurance

https://applications.cerner.com/firsthand/FirstHand_1a.aspx?id=28729
Offers assistance with treatment or equipment needs, based on funding criteria.



http://www.4jhc.org/jhcapplicationspage.html
A foundation for critically ill children offering financial assistance and counseling.

http://www.modestneeds.org/intro/
A grant based program for families or individuals in financial need

http://sosmd.org/
We enhance lives by supporting, educating and connecting the middle-class, seriously ill, and their loved ones, with catastrophic medical expense relief through our financial assistance programs, education and community outreach


http://www.microgiving.com/
The first crowdfunding website that lets you raise money for anything and give some forward to a charity, cause, or person of your choice. Microgiving is for anyone-- artists, musicians, film makers, developers, designers, dreamers, believers, idealists, inventors, entrepreneurs, non-profits, charities or people struggling through an economic hardship such as a loss of housing, medical emergency or natural disaster


http://bandangels.net/fundraisers
Every year loving moms use billions of bandages to soothe and heal the pain of little ones’ cuts and scrapes. Even the smallest injury warrants help from Dora, Hello Kitty, Barbie, or SpongeBob. Children love bandages. Why not combine the soothing and fun they want with the biblical learning they need AND earn money for your group? We’ve all been approached with the same fundraisers year after year: candles, candy, cookie dough, t-shirts, cookbooks, etc. Consumers are desperately hoping something new will come their way! Band Angels provides your group with an exciting, innovative product that is easy to sell with no risk!
How It Works
1. Determine how many boxes each person will sell.
2. Purchase boxes of Band Angels for $1.50 per box.
3. Sell boxes for $3.50 per box – that’s 57% profit!!
4. We will buy back any unsold boxes – no risk!
Why Band Angels over other fund-raising products?
57% profit on ALL sales – no Sliding Scale!
Brand new product for fundraisers – no competition! - affordable
http://www.gabrielsgift.net/
Our mission is to assist families financially, emotionally, and spiritually. We also raise awareness about CHD within the community and medical industry.

http://www.franceluxe.com/i/goodwishesscarves/Good+Wishes+Scarves.html
If you are a woman or girl experiencing a loss or thinning of hair as a result of illness or treatment, we'll send you a scarf in the pattern and color of your choosing, on us! Our beautiful It's a Wraps or Good Wishes Scarves are made from soft and silky, hand-picked breathable fabrics that flatter your face, protect you from sun and cold, and carry with them good wishes wherever you go. To receive a complimentary scarf or headwrap due to chemotherapy and hair loss, contact Laurie Erickson for more information, or call 888.884.3653

http://www.inspirationthroughart.org/
If you have a child, or know a child, who suffers from any type of serious illness or life altering disability we are here to help. Inspiration Through Art provides our special heroes with complimentary photo shoots, special cards and mail, gift packages, and various other programs, events, and fundraisers

http://dare-to-hope.org/
To better the lives of children with rare diseases and/or complex medical conditions, and raise awareness of rare diseases and complex medical conditions that affect children.


http://www.dempseyburdick.com/index.html
The Dempsey Burdick Memorial Foundation and various cemeteries are partnering in order to help families who have lost a child.

http://www.medicalert.org/
MedicAlert Foundation is a nonprofit organization providing 24-hour emergency medical information and identification service
Offers sponsor membership to qualifying families.

http://www.disabilityresources.org/MISSISSIPPI.html
Disability Resources, inc. is a nonprofit 501(c)(3) organization established to promote and improve awareness, availability and accessibility of information that can help people with disabilities live, learn, love, work and play independently.
(you can search for any state)

This is the place where the Now I Lay Me Down to Sleep Foundation gently provides a helping hand and a healing heart. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives. The NILMDTS mission statement is to introduce remembrance photography to parents suffering the loss of a baby with the gift of professional portraiture. We believe these images serve as an important step in the family's healing process by honoring their child's legacy.
The Now I Lay Me Down to Sleep Foundation (NILMDTS) administers a network of more than 7,000 volunteer photographers in the United States and 25 countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby
http://www.nowilaymedowntosleep.org/

Wish Upon A Hero is completely free to its users, allowing everyone who registers the opportunity to cast up to three wishes at a time. Because Wish Upon A Hero is designed to help everyone, wishes can be big or small, elaborate or simple, based on financial need or just asking for a simple favor
http://www.wishuponahero.com/


The Addison H. Gibson Foundation
The Addison H. Gibson Foundation helps prevent medical debt from occurring by providing grant funds to residents of western Pennsylvania who are facing expensive but necessary medical treatment. To apply, patients should contact the foundation's director with information about their condition, the treatment they will need for it, and the cost. The foundation pays the grant funds directly to the health care provider administering the treatment. Since The Addison H. Gibson Foundation will not pay for bills already incurred, patients should contact the foundation well before their treatment is to take place. Applicants must be referred by qualified physicians or social service workers who may request more information by contacting director Rebecca Wallace at (412) 261-1611.
Read more: http://www.livestrong.com/article/264673-medical-debt-relief-grants/#ixzz1AsjmJJZZ