Hannah has a FACEBOOK page!!!!
Please visit it and give it a "Like"!
http://www.facebook.com/pages/Hannahs-Pickle-Jar#!/pages/Hannahs-Pickle-Jar/232631276774039
Hannah's Pickle Jar
"A special site, for a special little girl!"
Welcome to Hannah's Pickle Jar!
Hannah is a very healthy and happy 10 year old, who loves music and to laugh and play with her family. Hannah is also Deafblind. She was born with BiLateral Optic Nerve APLASIA (complete absence of optic nerves in both eyes) and UniLateral Atresia Microtia (missing her left ear). She is totally blind. She has a moderate hearing loss in her good ear. She has 2 implanted magnetic BAHA's (bone anchored hearing aids). which increase her hearing abilities. Doctors were unable to find a syndrome or genetic reason for this to happen. She is fortunate in that no other issues have come to light.
Hannah lives with her Dad, Mom and Brother in Lehigh Valley, PA.We started this web page with a few things in mind.
Hannah is a very healthy and happy 10 year old, who loves music and to laugh and play with her family. Hannah is also Deafblind. She was born with BiLateral Optic Nerve APLASIA (complete absence of optic nerves in both eyes) and UniLateral Atresia Microtia (missing her left ear). She is totally blind. She has a moderate hearing loss in her good ear. She has 2 implanted magnetic BAHA's (bone anchored hearing aids). which increase her hearing abilities. Doctors were unable to find a syndrome or genetic reason for this to happen. She is fortunate in that no other issues have come to light.
Hannah lives with her Dad, Mom and Brother in Lehigh Valley, PA.We started this web page with a few things in mind.
To introduce the world to our daughter Hannah and to inform and bring awareness to people about deafblindness and its impact on those around the deafblind child.
In addition, many of the costs associated with deafblindness are NOT covered by insurance, government, or the school system. WE have to cover many of these costs. So far, many generous people have "gifted" us financially. We thank those who have partnered with us .
Hannah @ Great Wolf Lodge, Poconos, Pa. 5/2/10
For an awesome vacation that will far exceed your expectations, and for more information on Great Wolf Lodge, Poconos, Pa. visit...
http://www.www.greatwolf.com/poconos/waterpark
What is Deafblindness?
What is Deaf-Blindness?"It may seem that deaf-blindness refers to a total inability to see or hear. However, in reality deaf-blindness is a condition in which the combination of hearing and visual losses in children cause "such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness" ( 34 CFR 300.7 ( c ) ( 2 ), 1999) or multiple disabilities.
Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches in order to ensure that children with this disability have the opportunity to reach their full potential. A person who is deaf-blind has a unique experience of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is deaf-blind, the world is initially much narrower. If the child is profoundly deaf and totally blind, his or her experience of the world extends only as far as the fingertips can reach. Such children are effectively alone if no one is touching them. Their concepts of the world depend upon what or whom they have had the opportunity to physically contact. .....The range of sensory impairments included in the term "deaf-blindness" is great.("From Overview on Deaf-Blindness" by Barbara Miles.http://www.nationaldb.org/)
Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches in order to ensure that children with this disability have the opportunity to reach their full potential. A person who is deaf-blind has a unique experience of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is deaf-blind, the world is initially much narrower. If the child is profoundly deaf and totally blind, his or her experience of the world extends only as far as the fingertips can reach. Such children are effectively alone if no one is touching them. Their concepts of the world depend upon what or whom they have had the opportunity to physically contact. .....The range of sensory impairments included in the term "deaf-blindness" is great.("From Overview on Deaf-Blindness" by Barbara Miles.http://www.nationaldb.org/)
Bi Lateral Optic Nerve Aplasia
I know, its fancy Dr. jargon, but it is Hannah's official clinical diagnosis. Check out the following link for a case study done on it.
http://www.pediatricneurosciences.com/text.asp?2008/3/2/150/43645
Some of the highlights are...
• Twenty-nine out of forty-two cases reported in the literature are true cases of optic nerve aplasia ( Aplasia is defined as "absence of "); the others probably represent optic nerve hypoplasia ( "under-development of"). Out of four cases reported as bilateral ( meaning BOTH eyes) , only one case could possibly represent bilateral optic nerve aplasia. Optic nerve aplasia is a very rare anomaly. It is (an) overdiagnosed entity in the literature. Bilateral cases are exceedingly rare.
• Aplasia of the optic nerve and disc is a rare congenital anomaly that is typically unilateral (one eye). The optic nerve, disc, retinal ganglion cells, and retinal blood vessels are lacking. It occurs sporadically in an otherwise healthy person without sexual or racial predilection. Bilateral cases, if they do occur, are extremely rare and tend to be associated with significant central nervous system abnormalities as in hypoplasia case reports in the ophthalmic literature frequently misidentify hypoplasia for aplasia.
We know we are blessed in that Hannah has NO other issues, other than deafblindness.
http://www.pediatricneurosciences.com/text.asp?2008/3/2/150/43645
Some of the highlights are...
• Twenty-nine out of forty-two cases reported in the literature are true cases of optic nerve aplasia ( Aplasia is defined as "absence of "); the others probably represent optic nerve hypoplasia ( "under-development of"). Out of four cases reported as bilateral ( meaning BOTH eyes) , only one case could possibly represent bilateral optic nerve aplasia. Optic nerve aplasia is a very rare anomaly. It is (an) overdiagnosed entity in the literature. Bilateral cases are exceedingly rare.
• Aplasia of the optic nerve and disc is a rare congenital anomaly that is typically unilateral (one eye). The optic nerve, disc, retinal ganglion cells, and retinal blood vessels are lacking. It occurs sporadically in an otherwise healthy person without sexual or racial predilection. Bilateral cases, if they do occur, are extremely rare and tend to be associated with significant central nervous system abnormalities as in hypoplasia case reports in the ophthalmic literature frequently misidentify hypoplasia for aplasia.
We know we are blessed in that Hannah has NO other issues, other than deafblindness.
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I can see, and that is why I can be happy, in what you call the dark, but which to me is golden. I can see a God-made world, not a manmade world.
Helen Keller
