About Jenny

Through a mutual Facebook friend, I recently came in contact with Jenny Wakenell. She is a college graduate student with Turner's Syndrome. As you will read, TS doesn't hold Jenny back, she is an awesome example of what hard work and determination can do. Thank you to Mrs. Wakenell and Jenny for sharing with CHH! Jenny Wakenell is really doing something to make a difference!!






Due to Jenny's very busy schedule in school, her kind mom, Maureen, sent me this part of her story....
Jenny just started graduate school at the University of Michigan. Jenny wants to get a master’s degree in social work, is carrying a full schedule of classes and began an internship this semester. Jenny wasn’t diagnosed with Turner Syndrome until she was almost fourteen years old and just entering high-school. We were sent to a specialist (pediatric endocrinologist) because she was so very short (4’5”) at the time. We just thought it might be a question of more vitamins or something since we did have a number of short relatives. We were shocked to learn it was due to Turner Syndrome, a condition we never heard of. Jenny was immediately put on high doses of human growth hormone and gained seven inches in three years. Since her diagnosis in 2002, my husband, Jenny and I have made it our mission to learn all that we can about TS as well as NLD (Nonverbal Learning Disabilities) which can also be a result of Turner Syndrome. NLD can affect girls with TS in varying degrees. NLD may cause problems with motor skills, visual/spatial/organizational misperceptions and/or social difficulties. Therefore, early identification is extremely important. Fortunately, Jenny has always been an “honor student” both in her Catholic elementary and high schools. In college, she won several scholarships and awards, completed two honors programs and graduated with “high distinction.” Jenny does have some Nonverbal Learning Disabilities though, but through hard work, dedication and determination, she has done extremely well academically. (She’s usually doing homework until the “wee hours” of the morning.) Since 2002, we have attended all the national Turner Syndrome Society annual conferences. This organization (based in Houston) can provide a lot of great information. In fact, Jenny is a volunteer on their e-board to answer inquiries and offer personal insights to people around the country. We have also been to a TS conference in Canada, and Jenny has been to several specialized camps for girls with TS. Jenny has also participated in a number of medical research studies, such as Dr. Allan Reiss’ neurological one at Stanford University, Dr. Carolyn Bondy’s TS biological profile at the National Institute of Health and Dr. Michael Silberbach’s “Healthy Heart Study,” among others. Even though we didn’t know Jenny had TS when she was growing up, we now have a much better understanding of why certain things happened when she was younger (such as her trouble learning to ride a two-wheel bike - a “balance” issue most probably connected with NLD, she eventually was able to master her bicycle, but it did take much longer than her two older brothers). Anyway, Jenny has developed an awareness campaign for TS/NLD. In addition to giving speeches and seminars, she has created a travelling self-teaching exhibit, “The Turner Town Project.” This interactive display is a collection of dollhouses with storyboards in front of each building depicting some of the everyday challenges of a girl with TS/NLD from birth through her later teen-age years. Medical posters, a reference/lending library, comparison growth charts, resource guides, “real-life” photos, etc. also accompany the project. If you would like to read more about “Turner Town,” there are some pictures on http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign.

This section was written by Jenny on her dosomething.org project page...
Just before entering high school, I was shocked to be diagnosed with Turner Syndrome (and Nonverbal Learning Disabilities) by a pediatric endocrinologist. My regular family physician had not previously treated anyone with Turner Syndrome. Since I never heard of these conditions before, I became worried and did not know what health impairments might occur from this disorder. I decided to learn all that I could about TS and NLD. My life suddenly took a new direction as I became immersed in research, awareness, and advocacy. It was important to meet experts, make contacts, reach out to others, and examine my own feelings about disabilities. I’ve attended medical camps and national conferences around the US and Canada and talked with specialists and authors. I have traveled to Stanford University, the National Institute of Health and other places to participate in vital research studies. It is my sincere hope that my involvement in these studies will lead to better recognition, identification and treatment for anyone afflicted with TS or NLD. I am a volunteer with the Turner Syndrome Society for email/phone inquiries and interviews. (Sometimes, students are seeking a first-hand account for school reports, but other callers are looking for advice or reassurance.) I have also helped out with the younger girls at the national conferences – mentoring is especially gratifying to me. Little is known about TS and NLD among the general public, teachers, and even many doctors, so I created a multi-media awareness campaign as an individual initiative for a Girl Scout Gold Award. I did not want others to experience the negative feelings of uncertainty and anguish that I experienced. I designed workshops and seminars and have given speaking presentations to both adult and youth audiences about these medical issues. I constructed a self-teaching traveling exhibit, “Turner Town,” a collection of dollhouses with storyboards about some of the troubles and triumphs of a girl with TS and NLD. In the stories, the community rallies around her and supports her through the obstacles she encounters. With proceeds from private fundraisers and my own personal funds, I established a specialized library of books about TS and NLD. Medical posters, photo collages, a resource guidebook, growth charts, tot lot block set and children’s activities are included to provide more detailed information. Currently, I’m raising money to purchase a trailer to bring the exhibit to the TSSUS Conference in Indianapolis this July.


Please check out Jenny's efforts and learn more about TS at : http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign

Great news!

http://www.businesswire.com/news/home/20100921007164/en/Newborn-Coalition-Applauds-Federal-Advisory-Committee-Recommendation

See this link for exciting news on screening for Critical Cyanotic Congenital Heart Disease to the core panel for universal screening of all newborns in the United States.

CHH T-Shirt Fundaiser Payment

I will begin posting who I've received money from for t-shirt orders, so no one worried that it didn't make it through the mail! I know I will never remember to contact each individual person as I receive checks, so this will hopefully be an easier way. Thanks so much to everyone who is helping with this project! God Bless! M

Leigh Ann P., Erin H., Tish M., Faye B., Cindy B., Andrea W., Misty N., Carol P., Leah H., Krista R., Jenny K., Lisa S., Renee W., Krystal W., Shirley, Laura C., Megan F., Laura B., Melinda P., Ann E.,


I'll continue to update this list as I receive payment. Thanks Again!!

For when I am weak, then I am strong.

Three times I pleaded with the Lord to take it (my affliction) away from me. But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
2 Corinthians 12:8-10

Caroline's Story

The following story was given to me by Katie Ard Puckett who lives here in the Jackson area. I actually met Katie's mother, Mrs. Ard, when I returned to work after my Avery was born and had heart surgery. She shared pictures of Caroline with me, and basically told me that through all the hardship, there is much joy and happiness. I appreciated that so much, and hope others can see that through this story as well. I was so glad Katie agreed to share their story with us, and pray that God will continue to bless and heal sweet little Caroline. Thanks Katie and Family!


Caroline, 5 Days Old, after her 1st Open Heart Surgery

Caroline, today


Emily Caroline Puckett was born on Thursday, July 10, 2008. She was born with a serious heart defect called Hypoplastic Left Heart Syndrome (HLHS). This basically means that the left side of her heart is severely underdeveloped or nonexistent. To correct this, she must undergo a 3-stage surgical process. She had her first surgery (Norwood) on July 15, 2008, at Children's Hospital of Philadelphia (CHOP). After being in Philadelphia for a month, they let us come home. Caroline had many obstacles in those few months at home. After Caroline’s first round of immunizations she had seizures and had to be hospitalized at Blair E. Batson Children’s Hospital in Jackson for one week. In October 2008, Caroline went for a routine cardiology appointment and her oxygen readings were very low. Her cardiologist, Dr. Jennifer Shores, decided to keep Caroline overnight and schedule a heart catherization for the next day. The next morning, Caroline went in for a heart cath and they found that the shunt in her heart was clotted almost completely. The Dr. did not feel comfortable fixing the problem here, and therefore wanted us to go back to CHOP for the procedure.

When Caroline came back from her heart cath they brought her to me and put her in my arms while telling me that we were going to have to go immediately back to CHOP to have this fixed. Everything after that moment was a blur for me, but the nurses came in and took her from me to put her in the ICU setting to keep a better watch on her while we were going home and gathering our things. Within minutes of them taking Caroline from my arms she crashed and they told me to kiss her and tell her I loved her and walk away so that they could do all they could to help my baby. I can’t begin to tell you what that felt like. I was so powerless and my baby was slipping away from me as I watched. Caroline was emergently intubated and kept comfortable until they could arrange for an air jet to come pick us up. We arrived in Philadelphia in the middle of the night and they worked on her for hours to stabilize her for another cath the next morning. She was able to have the catherization and her shunt was stinted so that blood could move freely. The surgeon came to me that day and told me that 10% of these babies die suddenly at home between the first and second stage surgeries because of this very reason. If we had not had a Dr. appointment and been in the hospital when this happened, we would not have our little girl today. Caroline’s vocal cords were damaged during the emergency intubation and because of this, we had to thicken her formula to a nectar consistency to prevent aspiration. Shortly after we returned home from Philadelphia Caroline stopped eating by mouth because of the strain it was putting on her heart. We spent another 10 days at Blair Batson trying to work out feeding issues and learning how to deal with an NG tube for feeding that ran up her nose and down her throat. Caroline’s 2nd stage surgery was scheduled for December 5, 2008 and she had a scheduled pre-surgery heart cath planned for December 1st. We were very fortunate to have Sanderson Farms provide us with a flight to PA for our 2nd surgery. They told us that they would arrange for us to be taken if we could leave Nov. 25th. We spent Thanksgiving holidays at the Ronald McDonald House in Philadelphia and took Caroline to the hospital that Friday to be weened off of blood thinners. The heart cath that Caroline had on Dec. 1st showed that her aorta had narrowed and needed to be ballooned and reopened for optimal blood flow. Because of the procedure done during the heart cath, Caroline’s surgery would have to be postponed at least 4 weeks. The doctors did not want us flying back and forth between Philadelphia and Mississippi and decided that it would be best to keep Caroline in the hospital until surgery. Caroline had her 2nd stage (Glenn) surgery on December 22, 2008. After surgery Caroline did really well and was extubated very quickly and taken off a lot of the post-surgery meds. On December 23rd, in the middle of the night, I received a phone call saying that she coded and had to be re-intubated. That day was a very hard day for us because they kept her almost in a paralytic state the entire day and night. Christmas eve was a much better day and she started to slowly come around. By Christmas morning, they extubated Caroline and she was awake and aware enough to “open” her presents that had been provided by the hospital and to take a picture with Santa Claus. The next 2 weeks were spent being taken off medicines and working with physical and occupational therapy to start getting geared towards going home. Caroline never picked back up eating and the doctors at CHOP thought that it would be in her best interest to have a surgical procedure to insert a G-tube into her stomach for feeding. Finally, on January 22, 2009 they let us go home. After spending Thanksgiving, Christmas and New Years in Philadelphia, news of going home was music to our ears.
Caroline has been doing very good since January and has been living a VERY happy life. She goes to the cardiologist , now, only once every 3 months. She had to have a heart cath in May 2009 to balloon her aorta again and everything went really well. Caroline has one planned surgery left to go, and will be traveling back to Philadelphia in the spring. We could not have made it this far without the outpouring of love and support that we have received along the way. It has been a very long and hard journey that is not anywhere close to being over, but we are so very fortunate to have her. We hope to bring more awareness to the growing number of children born with congenital heart defects.
Sincerely,

Adam, Katie and Caroline Puckett

“1 in 100 babies is born with a congenital heart defect. WHAT IF THAT ONE WAS YOURS?”

Working on Blog!

If you happen to check out the blog while I am working on it, I apologize....I am trying to change things up a bit this weekend. Thanks for your patience!

In the words of Matt Hammitt

This insert was taken from the blog Bowen's Heart by Matt Hammitt of the band Sanctus Real. As I read this, I couldn't help but remember how surreal it was for me to see my child's heart beating through her open chest. The things heart families see and experience are undescribable.
For more on his story, visit http://bowensheart.com/
God has already used them so much through their music, I can only imagine what greatness will come out of this experience. God is always at work in our lives, take note! Please continue to pray for this family.



The Following is From My Journal

9.17.10

This morning is the last time I’ll get to peer through the window to Bowen’s beating heart. I can’t believe, that in such a short amount of time, it’s become normal for me to look down at my son with his little chest wide open. A friend told me that I’ve seen too much, but I’m realizing that I might not see enough. Everything I’ve watched happen in this hospital, all the pain I’ve felt, is deepening my faith, strengthening my marriage, and molding my character. As I lovingly stared into Bowen’s eyes just before midnight, my face only inches from his chest, I thought, “this love is an awesome mess.” I know I’m not the first person to think or to say something like that. Many great works of art have titles that are reminiscent of those words. I believe it’s because tension is the place where the worst of life and the best of true hope meet to unveil our eyes to God’s artistic work of redemption. What a mighty and creatively loving God we serve. He allows us to know great pain, so that we can know the greater pleasure of trading it in for purpose.

The Cross Healed Heart T-Shirt

Hi Everyone,
I just wanted to let everyone know that we are now taking orders for the Cross Healed Hearts t-shirts! I am going to take as many orders as I can before putting in my first order, and have listed all the information below. You may contact me at megbeau2@yahoo.com or through Facebook if you are interested in ordering.

They will be purple with the print seen below (far right will be chest pocket design and large artwork will be on the back) in the colors as shown. They come in Short Sleeve sizes Youth S- XL and Adult S- 5X. We are also offering Long Sleeve si...zes Youth S-XL and Adult S-2X. Pricing: Short Sleeve ($19.26) and Long Sleeve
($25.68). I can also ship for an extra $2.

We are also offering toddler sizes in short sleeve: 2T, 3T, and 4T and long sleeve:
2T, 3T, 4T, and 5/6T. They will be purple, Rabbit Skins brand shirts with the design on the front center (no back design). I will post pricing and exact design specifications as soon as I get more information.

Remember 100% of the proceeds goes to purchasing materials to supply Blair E. Batson Children's Hospital with hand-made blankets and heart-shaped "cough" pillows, as well as materials for the CHH applique pillows which are sent all over to those suffering with loss, illness, CHD, TS, etc.

All profits will be entered into a separate checking account in which complete documentation will be available on the CHH blog. My good ole mother in law is great at keeping books, and has donated her services for this project.

Just send your email address, quantity, and size. I will send you a confirmation message to let you know I have recorded the order, and will let you know the address to mail payment.

Sharpie Donation Drive for Batson!

We are conducting a Sharpie donation drive to supply Blair E. Batson Hospital, here in Jackson, with black Sharpie markers. The markers can be regular size or the newer small ones, but please make sure they have the normal tip- not the fine or fat tips. You may message me for my address, drop them off by my home, mail them, get them to my friends or family members, bring them by my classroom, or to church. I''m sure no one I know will mind getting them to me!
I spoke with our cardio social worker yesterday, and she said they are in need of them now. The children use them to have doctors, nurses, other staff and visitors sign their heart pillows.
We would appreciate even one marker donations! Thank you in advance for your support! No cash donations, markers only please.
God Bless!
Megan

CHH T-Shirt Project

After much anticipation, by me, of course, here is the art work for the upcoming Cross Healed Hearts T-Shirt! I believe I have decided to go with the top right artwork for the chest pocket, and the large piece will be on the back. This way, the heart stands out on the back, and the cross is featured on the front! I hope you like them...more info. coming soon! God Bless!!

Beautifully Said

Here's a beautiful quote from a beautiful lady, her story is also featured on this blog...


"The imprints on my chest that are forever etched into my skin are a window into a reality of a war I want to win as well as peranent badges of honor from brave battles already won"
~Lauren Celeskey, CHD Survivor w/ Tricuspid Atresia, Hypoplastic Right Ventricle... I have about 18 Heart Related scars

One Happy Little Man!

Here is Cain Clinkscales with his CHH pillow. Just look at that smile, will you? Thanks Catherine!