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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
 

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I am here and praying kawie I seen that on the KR site ...you guys have my blessing and here lately in life prayer is a good thing for all and must be there at these times...JH
 
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hey man when things get this sh**y you have still got your health and you have still got the love of your kids
i hope everything works out for you
 
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hey kawi pm or post your paypall i can shoot you a few dollars
when riding my quad i forget about any of the small problems in my life
if i can help you have a few hours of stress free riding it will be money well spent
 
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....

God bless you and your family. I hope everything works out for you.
 

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Discussion Starter #7
I wanted to give you guys an update on Devon's condition though it is not very good. We took him to a pediatric dentist after he lost a tooth at the bottom of his mouth for no apparent reason, poor kid only has two with two others just cutting in on the top. Anyhow the dentist told us that his other tooth is very loose as well and this is very unusual, he told us we should have a simple blood test to rule out or to determiine a more serious underlying medical condition!

Well the condition ithat he refered to is Hypophosphatasia. Devon does have to have some more genology tests done as the simple blood tests are not always 100% accurate (yeh right)! Anyway the following is a sniput from a medical journal: "Hypophosphatasia is a rare inherited metabolic disease of decreased tissue nonspecific alkaline phosphatase (TNSALP)and is characterized by defective bone and teeth mineralization and a deficiency of serum and bone alkaliine phosphatase activity. The disease comes in one of five forms, perinatal (100% lethal), infantile (which appears Devon has 50% mortality rate), childhood, adult, and odontohypophosphatasia. Perinatal hypophosphatasia is invariably lethal while infantile hypophosphatasia has a roughly 50% mortality rate with symptoms appearing within the first 6 months after birth. In general, patients are categorized as having "perinatal", "childhood" or "adult" hypophosphatasia depending on the severity of the disease, which in turn is reflected by the age at which the diagnosis is made. When the diagnosis is made before six months of age, some infants have a downhill and fatal course, but premature loss of teeth (less than five years of age) is the most common manifestation. Adults may be troubled by recurrent fractures in their feet and painful, partial fractures in their thigh bones.

As yet, there is no cure for hypophosphatasia and no proven medical therapy. Some medications are being evaluated. Treatment is generally directed towards preventing or correcting the symptoms or complications."

Heather, Ashlynn, and Devon have gone down to the shore (Ocean City NJ) and are 2 hours 15 min away and Heather has not found out ye what I knowI am leaving first thing tomorrow morning to tell my her the news in person, meanwhile I am here at home alone, well normally it is bad as I have said before, but now it is horrific!! I have been on the computer searching everything I can find out about this disease and have yet to find anything promising or positive. it is a very painful disease as the patient slowly looses his bone mass, his teeth, premature and easy fractures, this is also the cause of his Hydrocephalus, due to the fact that it has shown up so early his diagnosis is very grim, I can tell you guys that I have not cried more in one day than I have today.

Even writing this is killing me guys but again I have nobody to share this with: my little angel of a son is in pain and there is no cure, I would do anything to take away his suffering! I have slept a total of maybe 8 hours in the past three nights!!

I don't want anything ffrom anybody, I can't even take talking to anyone right now as I am having a very hard time accepting this. I am going down to Ocean City NJ to share this with Heather and I know it will kill her as it already is doing to me!

I am sorry I can't write anymore right now and I probably will not be back until Monday as I just need a few days away from everyone and really need to go spend time with my son!! I need to just hold him and tell him how much I love him!

Hopefully more tests (geneology) will come back and tell us that there is a mistake and that he will be just fine, that he will live and grow normally. What we really need right now is prayers for peace (in Heather's and my mind), strength to accept the uncontrollable, and something whatever to help the doctors to find the correct problem and/or disease, and most of all pray for Devon so that our poor little one year old may not suffer!

This is just about the final straw that I can take guys, I really have reached my breaking point and know that something has to change fast, real fast!
 
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