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Wednesday, July 27, 2011
Monday, July 18, 2011
My husband loves me....
We have a horse, more accurately I have a horse. His name is Coppertop. He is a Welsh X liver chestnut medium sized pony. He is trained (kinda) as a hunter jumper. We, me and my trainer at the barn, have been working with him for almost a year. Over the past several months he has required medical attention due to a tumor on his boy parts. Kinda funny and really sad! Poor guy had to have a good portion of his boy parts removed, not to worry he can still pee, as for other functions...well he's a gelding so he has never had a need for that activity. We took him about five weeks ago for his first surgery to UT Knoxville. Copper stayed for a couple nights and we went back to pick him up, not a huge deal but painful for the guy.
The icky part is he has been swelling on his stomach and boy parts since the surgery. So I have been doing the equivalent of cold compresses and light exercise to help reduce the swelling. Now there is good news and bad news. Good news: the swelling is almost all the way gone! Bad news: we take him back this Wednesday to remove more lymph nodes, which means more driving, more pain, and MORE swelling!!! This time the surgery is very simple and will be done on an outpatient basis, so we get to bring him back home with us.
In summary: I have a horse, he is a great jumper, I love him a whole lot, most importantly Kurt LOVES me a whole lot because he puts up with my obsession with animals!!!
The icky part is he has been swelling on his stomach and boy parts since the surgery. So I have been doing the equivalent of cold compresses and light exercise to help reduce the swelling. Now there is good news and bad news. Good news: the swelling is almost all the way gone! Bad news: we take him back this Wednesday to remove more lymph nodes, which means more driving, more pain, and MORE swelling!!! This time the surgery is very simple and will be done on an outpatient basis, so we get to bring him back home with us.
In summary: I have a horse, he is a great jumper, I love him a whole lot, most importantly Kurt LOVES me a whole lot because he puts up with my obsession with animals!!!
Monday, July 11, 2011
Facts About Jonah's Diagnosis
Jonah has a rare disorder called Sept-Optic-Dysplasia. There are no known causes for this disorder which occurs in utero as the baby is developing. Septo-optic dysplasia (SOD) is also known as de Morsier syndrome, named after Swiss neurologist Georges de Morsier, who was the first to identify this congenital - which means present from birth - malformation that is characterised by a triad of 'symptoms' affecting the midline of the brain.
1. Underdeveloped optic nerves
The human eye contains around one million optic nerve bundles. SOD sufferers range in their vision capability, from being completely blind, to having only somewhat diminished vision. As Jonah Tyler is unable to verbalize how much he can see yet, we do not know for sure ho much vision he has. It is evident his vision is best up close and in the center of his visual field. He will be classified as legally blind the rest of his life. Jonah has nystagmus, which is the rapid horizontal movement of the eyes, almost as if they were 'vibrating'. This is the biggest outward sign that Jonah has limited vision. This condition is very common in people with SOD. Underdeveloped (hypoplastic) optic nerves cannot be corrected by surgery or medication, due to no abnormalities with his eyes, corrective lenses would not improve his vision.
2. Missing portion of the corpus calloscum.
The corpus calloscum is the bridge that connects the two hemispheres of the brain. Jonah is missing the front portion of this bridge thus making it more difficult for the two sides of his brain to communicate. The encouraging part of this is that the brain is able to form new connections through alternative neural pathways. Jonah's therapies and daily activities at home with us facilitate these new connections.
3. Hormone deficiencies (hypopituitarism)
Like the optic nerve chasm, and the corpus calloscum, the pituitary (hormone) functions are also found on the midline of the brain. It affects 70% of SOD cases. The hormone most commonly missing in SOD children and adults is the growth hormone. Jonah Tyler is tested regularly to ensure he has normal hormone function, he is thankfully not presenting with any deficiencies yet.
No one knows what cause Septo Optic Dysplasia. 1% of cases are genetic, and there are four gene mutations causing that 1% that we know of, with more being discovered every day. Jonah will be visiting a genetic doctor in the next several weeks to rule out a genetic cause. It is a highly variable condition. Children like Jonah Tyler have developmental delays, such as delayed gross motor skills and speech. There may also be cognitive impairment, thus far Jonah's doctors and therapists do not see any signs of this at this point. Kurt and I do not either, he is very bright and eager to learn new things. Autism is affecting around 30% of Septo Optic Dysplasia cases, other great news is that Jonah is not exhibiting any autistic behaviors. He loves to engage with others, especially his brother and sister.
1. Underdeveloped optic nerves
The human eye contains around one million optic nerve bundles. SOD sufferers range in their vision capability, from being completely blind, to having only somewhat diminished vision. As Jonah Tyler is unable to verbalize how much he can see yet, we do not know for sure ho much vision he has. It is evident his vision is best up close and in the center of his visual field. He will be classified as legally blind the rest of his life. Jonah has nystagmus, which is the rapid horizontal movement of the eyes, almost as if they were 'vibrating'. This is the biggest outward sign that Jonah has limited vision. This condition is very common in people with SOD. Underdeveloped (hypoplastic) optic nerves cannot be corrected by surgery or medication, due to no abnormalities with his eyes, corrective lenses would not improve his vision.
2. Missing portion of the corpus calloscum.
The corpus calloscum is the bridge that connects the two hemispheres of the brain. Jonah is missing the front portion of this bridge thus making it more difficult for the two sides of his brain to communicate. The encouraging part of this is that the brain is able to form new connections through alternative neural pathways. Jonah's therapies and daily activities at home with us facilitate these new connections.
3. Hormone deficiencies (hypopituitarism)
Like the optic nerve chasm, and the corpus calloscum, the pituitary (hormone) functions are also found on the midline of the brain. It affects 70% of SOD cases. The hormone most commonly missing in SOD children and adults is the growth hormone. Jonah Tyler is tested regularly to ensure he has normal hormone function, he is thankfully not presenting with any deficiencies yet.
No one knows what cause Septo Optic Dysplasia. 1% of cases are genetic, and there are four gene mutations causing that 1% that we know of, with more being discovered every day. Jonah will be visiting a genetic doctor in the next several weeks to rule out a genetic cause. It is a highly variable condition. Children like Jonah Tyler have developmental delays, such as delayed gross motor skills and speech. There may also be cognitive impairment, thus far Jonah's doctors and therapists do not see any signs of this at this point. Kurt and I do not either, he is very bright and eager to learn new things. Autism is affecting around 30% of Septo Optic Dysplasia cases, other great news is that Jonah is not exhibiting any autistic behaviors. He loves to engage with others, especially his brother and sister.
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