Emily Shae
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Our Princess Emily Shae has been very ill since birth. Emily has had 96 surgeries as of yet with multiple hospitalations. Just within the last 15 months, Emily has been hospitalized 11 times and we almost lost her twice. Within this time frame.. she has had pneumonia nine times.
She was born with Down syndrome. Some of her medical complications are as follows.. TEF (Tracheoesophageal fistula), She was born with two heart defects, a PDA (patent ductus arteriosus) and an ASD (atrial septal defect). She had open-heart surgery to repair the two defects. Emily has been getting her esophagus dilated since December 2006. They have also dilated her ear canals and ear tubes have been put into her ears four times. They have also removed her adenoids. Emily has also had a two-part major sinus surgery to create her left sinus. Ports in and out. One vocal chord is paralized and we have had to do a bulk injection to reduce her asperations. She also has severe reflux. Emily has a pocket (diverticulum) just past the stricture in her esophagus. Emily has had multiple dental surgeries as well. She is immunity compromised:She is prone to infections because they removed her thymus (when they did her open heart surgery), which is a key organ to assist her immune system. Emily is hospitalized way too often! I have honestly lost count of her actual hospital admissions. We have come way to close to losing Emily nine times.
So... hoping the specialist Cincinnati Children's Hospital with their vast knowledge will help shed some light on a productive care plan for Emily Shae.
Emily was accepted into the Aero Digestive Program at Cincinnati Children's Hospital. This is a diagnostic program that would hopefully find a way to help Emily.. we have just been slotted the week May 27-30. We are planning to fly out May 25ish. We will have to pay for airline tickets (for three.. My husband is staying home to work. I'll be taking both of my daughters with me.) , hotel room, food, and what ever else comes along traveling with two children. We would greatly appreciate any assistance that comes our way. Thank you in advance from the bottom of my heart...
She was born with Down syndrome. Some of her medical complications are as follows.. TEF (Tracheoesophageal fistula), She was born with two heart defects, a PDA (patent ductus arteriosus) and an ASD (atrial septal defect). She had open-heart surgery to repair the two defects. Emily has been getting her esophagus dilated since December 2006. They have also dilated her ear canals and ear tubes have been put into her ears four times. They have also removed her adenoids. Emily has also had a two-part major sinus surgery to create her left sinus. Ports in and out. One vocal chord is paralized and we have had to do a bulk injection to reduce her asperations. She also has severe reflux. Emily has a pocket (diverticulum) just past the stricture in her esophagus. Emily has had multiple dental surgeries as well. She is immunity compromised:She is prone to infections because they removed her thymus (when they did her open heart surgery), which is a key organ to assist her immune system. Emily is hospitalized way too often! I have honestly lost count of her actual hospital admissions. We have come way to close to losing Emily nine times.
So... hoping the specialist Cincinnati Children's Hospital with their vast knowledge will help shed some light on a productive care plan for Emily Shae.
Emily was accepted into the Aero Digestive Program at Cincinnati Children's Hospital. This is a diagnostic program that would hopefully find a way to help Emily.. we have just been slotted the week May 27-30. We are planning to fly out May 25ish. We will have to pay for airline tickets (for three.. My husband is staying home to work. I'll be taking both of my daughters with me.) , hotel room, food, and what ever else comes along traveling with two children. We would greatly appreciate any assistance that comes our way. Thank you in advance from the bottom of my heart...
Organizer
Tania Morrison Clark
Organizer
St. Petersburg, FL
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