I am so tired of bad news. WARNING: this blog post is full of it. We have been re-admitted to CHOP. Hannah went to rehab with a wonderful attitude and determined to work hard and focus on re-gaining her independence. Shortly after we arrived and we completed her PT evaluation, she began vomiting. The vomiting that has been intermittent starting right after the first halo traction surgery became frequent and consitent. She had not been able to keep food down for days and had been vomiting for several days in a row so we called our ortho team and they advised us to bring her back to CHOP.
Over the past two days we have undergone several tests and diagnostics. While we still await some tests and results, we have already received some answers. Hannah has Superior Mesenteric Artery (SMA) syndrome, also called Wilkie’s syndrome or cast syndrome. It is a rare disorder in which acute angulation of the SMA causes compression of the third part of the duodenum between the SMA and the aorta, leading to obstruction. There is a better explanation here
https://rarediseases.info.nih.gov/diseases/7712/superior-mesenteric-artery-syndrome
Treatment for SMA is a feeding tube to try and gain some weight to increase the mesenteric fat pad which supports the SMA. Weight gain alone can sometimes restore the mesenteric fat pad, thereby increasing the angle of the superior mesenteric artery as it leaves the abdominal aorta.
We are hopeful that with the support of the feeding tube and the nutrition that it will help Hannah get, that the SMA syndrome will resolve. If not, we need to pursue surgical options. In the meantime, her PT and physical development is not the first priority. We need to get her medically and physically healthy again before we can focus on her PT.
We are continually grateful for the love and support that has surrounded us. At every turn there seems to be another uphill battle, and the love and support has carried us even when we did not think we could face one more hurdle. Hannah is struggling to remain positive and determined. I think this little girl has reached her limit of bad news, struggles and set backs. I hope to have better news in a day or so…
Hannah Defying Gravity 
Sending Love, Positivity and Strength to Hannah and your whole family! I know you are going through Hell right now and finding a bright side may seem impossible but there is a bright side- the cause has been identified and they know what it is and how to correct it.
This disease doesn’t know who it is messing with- Hannah the Warrior! You have overcome so much and with all the determination, inner strength, love, support, prayers, good vibes and don’t forget expert medical care you will conquer this too!
Hang in there Hannah, Jenean and your Entire Family please don’t lose Hope or Faith. We are all standing United with you and we believe in your will to overcome whatever obstacles are placed before you! You aren’t alone and if you need anything you know we are here to help you through this in anyway we can. ❤️
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So sorry to hear about this setback….I know Hannah is a strong young lady and will fight through this as well. God only gives us what he thinks/knows we can handle. I will continue to pray for sweet Hannah and all of the family. Keep the faith and stay strong! ❤️
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You are all, especially Hannah, still in our daily thoughts and prayers. If there is anything we can do to help, please do not hesitate to reach out.
Sending our love and positive and healing thoughts your way.
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Sorry to hear about this setback. I know it is overwhelming to have so many obstacles. We are praying for you all. Hopefully with some time and calories the SMA will resolve and I’m sure Hannah will rally to work hard to regain strength and function❤️
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Continued prayers! 🙏
Thinking of you all! ❤️😘
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Hey Hannah. Thinking of you and sending love and prayers. Feel better sweetheart. ❤️❤️❤️
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Always thinking of you with lots of love and prayers! Feel better!
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We must accept finite disappointment but never give up infinite hope, said Dr. Martin Luther King, allow yourself to be frustrated Hannah, it’s very important to know that is NOT a sign of weakness! A new day will provide you opportunities for renewed hope, one good or bad day at a time!
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Accept the finite disappointments but never give up infinite hope, said Dr. Martin Luther King, it’s ok to feel frustrated Hannah, and know that feeling is NOT a sign of weakness, a new day, whether good or bad, always affords you opportunities for new hope
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To Hannah, Jenean and each of the family- my heart continues to hold you close and you are in my prayers. As I read this update I was thinking about the female athlete whole recently climbed the famous sheer wall, El Capitain, freestyle in 21 hours. She said she was scared throughout the climb and after a fall and a head injury had to decide if she could continue. She did continue. And how she did it was she took one section at a time – until she reached her goal. When things push me down and more happens then I think I can handle, I get focused on one small thing and just deal with that. That’s all you need to do right now. You have an army of love and support around you, including legions of angels that have your back.😇✨💫🦋🐬🌈💜
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Lita loves you!!!!
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So sorry to hear this! But Hannah is strong and so are you all …keep your hope and faith strong. You have an army of prayers that can will Hannah to better health and recovery. You will beat this Hannah…know that you all are not alone…He stands by your side with his band of angels…❤❤
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I continue to pray for Hannah’s recovery. Positive thoughts going your way.
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Hannah is truly a warrior. Teddy Roosevelt once said that nothing worth doing/having comes easy. I believe he would have a tremendous amount of respect for Hannah. Her emotional strength and determination are things most of us could only dream about attaining. Just know that I am continually inspired by her grit, as well as the solidarity of your family. I’m sending out as much positive energy as possible, and will keep praying for a swift recovery. We believe in you, Hannah!
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Praying all day. May God Bless her.
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Hannah, Jenean, Nolan, Kevin, & family ~
Sending love, positivity, and strength because I know you are in need of some! Don’t lose hope or faith! I believe in you! Keep focusing on the dreams and goals that you have set before you! You will persevere & overcome!
Thinking of you,
Kristen
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Aw Hannah, I’m so sorry to hear. I’m sure it is disheartening, and it’s ok to feel overwhelmed and upset.
You have an amazing team and family around you, and I know they will do everything they can to help you heal and get better. ❤️
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