Sean F.
Idaho
Birth Date - January 22, 1997
Main Diagnosis - Congenital Diaphragmatic Hernia/Pulmonary
THEME: WILD ANIMAL PREDATORS , to include endangered animals
(From this list:) BUT NO LIONS!
Wolves (gray, red, Mexican), hyenas (spotted, striped, brown), eagles (bald, golden, fishing, etc), hawk, cougar, wolverine, bears (grizzly, polar,
black, sun bear, Kodiak, sloth bear, etc), jaguar, tiger, cheetah,
crocodile, snakes (rattler, viper, mamba, cobra, king, any kind really),
Komodo dragon, killer whale, shark (great white, hammerhead, whale shark, etc), sawfish, jellyfish, piranha, whales, leopard seal, fossa, Gila
monster, dingo, coyote, walrus, caiman, spiders, tarantulas, scorpions,
African wild dog, fox, jackal, serval, ocelot, lynx, poisonous dart frog,
octopus, owls, snow leopard, mongoose, barracuda
Quilt Deadline: 2/1/15
Sean's Story
Sean was born with a birth defect called CDH (Congenital Diaphragmatic Hernia) which means that most of his abdominal organs were in his chest at birth. Typically about half the babies born with this die at or soon after birth, so we are blessed beyond measure to still have him with us 17 years later. When he was 3 1/2 months old he lost a large portion of intestine to gangrene, and has been dependent on IV nutrition (TPN) and tube feeds ever since. When he was a little older, he was diagnosed with severe scoliosis and had 7 surgeries for it, including 2 spinal fusions and halo traction with 2 months in a hospital in a different state. He also has sleep apnea and has been on a Bipap/Avaps machine since he was 5 years old, as well as oxygen, and blood thinners because he clots easily. He is such an amazing trooper, he has even had 16 cardiac caths to place stents and balloon them open when they close up!
Last year he had a serious problem where he ended up with a great deal of blood and fluid in his pericardium (the sac lining the heart) and had to have it drained. A few months after that we found out he was diagnosed with Pulmonary Hypertension. That means high blood pressure in the heart and lungs. Unfortunately that is something that will progress to heart failure in time, but we are working hard to find medication that will reduce the effects of it so that his quality of life isn't reduced too much (though he does hate having to wear oxygen during the day!).
While he was busy having 54 surgeries, little did we know he also had another issue we always thought was due to his complex medical history. It turned out he was on the Autism spectrum, what they used to call Asperger’s, but now is just ASD (Autism Spectrum Disorder). He is smart in his preferred subjects, but emotionally, will probably always be a little boy. He loves animals, and spends hours each day learning about them, especially learning to take photographs of them. Someday he has a dream of becoming an animal videographer and going to Africa to make documentaries of his favorite's, which are Hyenas , or if he can't travel due to medical reasons, here in the states Wolves are amazing too. He always chooses the underdog in stories, and in life. Probably because that is what he is too... no one thought he would still be with us this long, but thankfully God has a different answer than Man.
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"Thank You"
The quilt is absolutely amazing! I don't know how to thank you, and all the stitchers. Sean was speechless when he saw it. He had no idea it was coming, so when he opened it he was looking at the different squares and just shaking his head. Then, being the information nut that he is, he started looking to see where all the squares were from and trying to remember what all the initials of the states stood for. He was SO excited to see the Grizzly bear with the salmon was from a town very close to where we live!
Right now he has it on a chair next to his desk so he can keep looking at it. Super sweet.
Bless you all for your hard work, your care, and your love in making such a special and unique creation for my super sweet and special boy.
Heidi (and Sean!)
