KTM suggested that I share my story with you all:
My son was born with Craniosynostosis which is a defect in which one or more of the flexible and fibrous joints (cranial sutures) between the skull bones closes too soon; it occurs before birth or within a few months after birth. The skull cannot expand normally with growth of the brain, and so assumes an abnormal shape. The premature closing of one or more of these cranial sutures stops the normal capacity of the skull to expand in early childhood. As not all of the cranial sutures will close, the skull expands in the areas that are still flexible. This results in an abnormally shaped skull or face.
Basically his skull fused together way too early and his brain had no where to expand to except through that small little soft spot on all newborns, his brain started bulging through that and began pushing against his optic nerve (bulging his eyessuckets out). His operation was done Dec. 6 at CHOP (Children's Hospital of Philadelphia) he was just 6 months old at the time! They cut out 1 1/2" of bone from the top of his skull from ear to ear and then cut the back of his skull in half and swapped the pieces and rotated them 180 degrees. All in all the operation was pretty successful. However in Febrauary he was rushed back in for an emergency surgery due to Hydrocephalus, sometimes known as Water on the Brain, which is a condition in which abnormal accumulation of cerebrospinal fluid (CSF) in the brain causes increased intracranial pressure inside the skull. This is usually due to blockage of CSF outflow in the brain ventricles or in the subarachnoid space at the base of the brain. He therefore had to have a cerebral shunt put in. In layman's terms they drilled a hole through his skull and inserted a tube with a valve in it, the tube then was run under the skin in his head down through his neck and into his stomach. This allows for the CSF to freely drain. This shunt will have to be in him for his whole life.
About three weeks ago however we noticed a bulge again forming in the back of his head plus addition crying and sirritation. We were due for a followup visit and they performed an immediate Catscan and we where told that there is a spot in the back of his head that never closed up and never will. Basically there is a 3/4" by 3" spot where there is no bone covering his brain. This obviously is not good and we are looking at another possible surgery in the next two to three weeks.
While all this was going on my 3 year old daughter was diagnosed with a sensory deficiet disorder or sensory integration disorder, she needs to be put into occupational therapy.
All of this has led to tremendous medical bills and crazy amounts of stress.
If that was not enough in January my boss came to me and told me that he could not afford paying me anymore (four weeks after my sons surgery)!! He put me on 100% commision which is total BS. Then to top it all off my wife and I during all of this have seperated mainly due to the stress but the fighting was getting out of control! She nows lives with her parents 2 1/2 hours away and I only get to see my little princess on weekends and my son only for 15-30 minutes every weekend. Due to all the financial burden and my crappy job we ( well actually I) am being forced to sell our house!
I don't know if this was appropriate to get this personal but I have been alone alot lately with no body to really talk to except you guys! Our family could really use a few prayers during these tough times.
To boot I have been quadless for over a year now. I have managed to borrow money from my parents to buy a 2002 P650 but still I am $300 short and am dying to go pick it up! I really am dying not being able to ride for so long and to read all of your threads everyday. My last ride was actually the 2005 GNCC race at Unadilla where I flipped and tumbled down a huge mountain and broke 3 ribs and tore my rotator cuff.
Thank you KTM for a terrific site and allowing me to post!
Kawy
My son was born with Craniosynostosis which is a defect in which one or more of the flexible and fibrous joints (cranial sutures) between the skull bones closes too soon; it occurs before birth or within a few months after birth. The skull cannot expand normally with growth of the brain, and so assumes an abnormal shape. The premature closing of one or more of these cranial sutures stops the normal capacity of the skull to expand in early childhood. As not all of the cranial sutures will close, the skull expands in the areas that are still flexible. This results in an abnormally shaped skull or face.
Basically his skull fused together way too early and his brain had no where to expand to except through that small little soft spot on all newborns, his brain started bulging through that and began pushing against his optic nerve (bulging his eyessuckets out). His operation was done Dec. 6 at CHOP (Children's Hospital of Philadelphia) he was just 6 months old at the time! They cut out 1 1/2" of bone from the top of his skull from ear to ear and then cut the back of his skull in half and swapped the pieces and rotated them 180 degrees. All in all the operation was pretty successful. However in Febrauary he was rushed back in for an emergency surgery due to Hydrocephalus, sometimes known as Water on the Brain, which is a condition in which abnormal accumulation of cerebrospinal fluid (CSF) in the brain causes increased intracranial pressure inside the skull. This is usually due to blockage of CSF outflow in the brain ventricles or in the subarachnoid space at the base of the brain. He therefore had to have a cerebral shunt put in. In layman's terms they drilled a hole through his skull and inserted a tube with a valve in it, the tube then was run under the skin in his head down through his neck and into his stomach. This allows for the CSF to freely drain. This shunt will have to be in him for his whole life.
About three weeks ago however we noticed a bulge again forming in the back of his head plus addition crying and sirritation. We were due for a followup visit and they performed an immediate Catscan and we where told that there is a spot in the back of his head that never closed up and never will. Basically there is a 3/4" by 3" spot where there is no bone covering his brain. This obviously is not good and we are looking at another possible surgery in the next two to three weeks.
While all this was going on my 3 year old daughter was diagnosed with a sensory deficiet disorder or sensory integration disorder, she needs to be put into occupational therapy.
All of this has led to tremendous medical bills and crazy amounts of stress.
If that was not enough in January my boss came to me and told me that he could not afford paying me anymore (four weeks after my sons surgery)!! He put me on 100% commision which is total BS. Then to top it all off my wife and I during all of this have seperated mainly due to the stress but the fighting was getting out of control! She nows lives with her parents 2 1/2 hours away and I only get to see my little princess on weekends and my son only for 15-30 minutes every weekend. Due to all the financial burden and my crappy job we ( well actually I) am being forced to sell our house!
I don't know if this was appropriate to get this personal but I have been alone alot lately with no body to really talk to except you guys! Our family could really use a few prayers during these tough times.
To boot I have been quadless for over a year now. I have managed to borrow money from my parents to buy a 2002 P650 but still I am $300 short and am dying to go pick it up! I really am dying not being able to ride for so long and to read all of your threads everyday. My last ride was actually the 2005 GNCC race at Unadilla where I flipped and tumbled down a huge mountain and broke 3 ribs and tore my rotator cuff.
Thank you KTM for a terrific site and allowing me to post!
Kawy
