Those of you that know William Christopher know that he is a bright loving child who has been healthy and happy over the last 6 years. The first part of March 2006 he was standing perfectly still talking to me in mid sentence and fell over, his eyes deviated to the right, and he stared right through me for abut a minute. When he finally "snapped out of it" he looked at me like I was crazy when I asked him if he was ok. He had no recollection of the event. He complained of a mild headache in his forhead for approx. an hour and then when asked about it said that it didn't hurt anymore. He had another episode much like this almost a week later. I scheduled an exam with our pediatrician and we lucked out and were able to see the pediatric neurologist that day also. The doctor feels that there is at least a 1 year history after our discussion. He has had "staring spells" at school and trouble concentrating, but his teacher felt that he was bored in class. He also has had a couple of episodes where he has had incontinance or vomitted and when asked about it said "I didn't know I needed to." He is an extremely bright child who is reading at a 3rd grade level and the teacher and councelors were chalking his spells up to him being a smart child who wasen't being challenged enough. The doctor feels like these were probably during seizures that we were not noticing.
Tests and more tests, questions and no answers, then answers, but not answers we wanted to hear. William has been diagnosed with a Venous Angioma in the left frontal region of his brain, Epilepsy, and Aytpical Autism. But nothing in the medical world is cut and dry, and there are typically more questions than answers. Please feel free to read through the journal entries and follow our roller coaster to the present, or join in now and follow along as we continue to love, learn, and live life.
I used to go home every day and hug my child and thank God that he was healthy and say a prayer for the unfortunate children and thier families that I care for at the hospital that had encountered medical difficulties. Now we are that child and that family.
(Lots has gone on with Will since this orignal post was wrote in 2006, if you would like to read more about his journey from then until the start of this blog, feel free to message me for information on his Caringbridge site.)
Sunday, July 31, 2011
Jenna's Story
Headaches and exhaustion are just part of the game when you are a single mother working crazy hours. Losing your balance and tripping over things that aren't even there is just getting older and not being as nimble as we once were. Scatter brained thoughts and sleepless nights are the norm when you live and breathe a medical world both at work and at home. 15 years of signs, 15 years of ignoring them.
Gentle tingling in my hands and arms, blurred vision, achy and stiff joints and muscles, stress, surely... right?? Ok, so the tingling in my hands and arms became a slight concern that got an amazing doctor friend curious. Labs and research and tests and I soon found myself with as many doctors and medications as Bouga... with one slight difference. We knew WHAT was wrong with Bouga. A million labs and tests and medications and two wrong diagnosises later, I was ready to settle for my original theory- I am a stressed single mother stretching myself too thin and this was all in my head. A year with that theory and I had adjusted to the tingling and clumsiness and wierd visual shifts but when the gentle tingling spread to all parts of my body and became painful pins and needles and all tests and exams came back normal and negative for whatever each one was testing for, I was sent to MRI. Prepared for another test to be normal, I never gave the MRI a second thought. It was going to be one more "nope, this is not what is wrong with you" moment.
Even with all of my medical knowledge, even with all of my experiences with Will and his journey where I learned the ins and outs of being on the patient side of the medical world instead of the caregiver side, I was not prepared for the phone call that came next. "Remember when you said you were starting to think this is all in your head? Well, it is. LITERALLY." A Chiari 1 Malformation with a Syrinx was found on the the MRI by accident and neurosurgery needed to care for me. A narrowing in the bottom of my skull that essentially is shoving the bottom of my brain into the top of my spinal canal and forcing spinal fluid into the spinal cord itself. I had to look at the phone, look at the clock on the wall with the date showing brightly, and ask the voice on the other end of the phone if it had the right patient. After three years of not knowing who should be caring for me, not having answers, and not knowing what was coming next, I had an answer, and someone to take care of me.
Not much could have shaken me, 5 years ago we were taken to hell and back with Will and we had built a seemingly indestructible world and conquered what we had been told we would not, but THIS shoke me. So, almost exactly 5 years from when I began musing and typing out my thoughts, experiences, and emotions so that all of you could come along with me on the journey as a special needs mom, I begin musing and typing out my thoughts, experiences, and emotions so that all of you can come along with me on the journey as a patient.
Although prayers and support are most welcome, sympathy and pity are not. I open our life in effort to acknowledge and respect the amazing web of family and friends we have accumulated over the years, to help others understand, and to find understanding myself. No matter if you join us as a co-worker, an online friend, a networking Super Family, a personal friend, or a caring stranger- welcome to our family, and my journey.
Gentle tingling in my hands and arms, blurred vision, achy and stiff joints and muscles, stress, surely... right?? Ok, so the tingling in my hands and arms became a slight concern that got an amazing doctor friend curious. Labs and research and tests and I soon found myself with as many doctors and medications as Bouga... with one slight difference. We knew WHAT was wrong with Bouga. A million labs and tests and medications and two wrong diagnosises later, I was ready to settle for my original theory- I am a stressed single mother stretching myself too thin and this was all in my head. A year with that theory and I had adjusted to the tingling and clumsiness and wierd visual shifts but when the gentle tingling spread to all parts of my body and became painful pins and needles and all tests and exams came back normal and negative for whatever each one was testing for, I was sent to MRI. Prepared for another test to be normal, I never gave the MRI a second thought. It was going to be one more "nope, this is not what is wrong with you" moment.
Even with all of my medical knowledge, even with all of my experiences with Will and his journey where I learned the ins and outs of being on the patient side of the medical world instead of the caregiver side, I was not prepared for the phone call that came next. "Remember when you said you were starting to think this is all in your head? Well, it is. LITERALLY." A Chiari 1 Malformation with a Syrinx was found on the the MRI by accident and neurosurgery needed to care for me. A narrowing in the bottom of my skull that essentially is shoving the bottom of my brain into the top of my spinal canal and forcing spinal fluid into the spinal cord itself. I had to look at the phone, look at the clock on the wall with the date showing brightly, and ask the voice on the other end of the phone if it had the right patient. After three years of not knowing who should be caring for me, not having answers, and not knowing what was coming next, I had an answer, and someone to take care of me.
Not much could have shaken me, 5 years ago we were taken to hell and back with Will and we had built a seemingly indestructible world and conquered what we had been told we would not, but THIS shoke me. So, almost exactly 5 years from when I began musing and typing out my thoughts, experiences, and emotions so that all of you could come along with me on the journey as a special needs mom, I begin musing and typing out my thoughts, experiences, and emotions so that all of you can come along with me on the journey as a patient.
Although prayers and support are most welcome, sympathy and pity are not. I open our life in effort to acknowledge and respect the amazing web of family and friends we have accumulated over the years, to help others understand, and to find understanding myself. No matter if you join us as a co-worker, an online friend, a networking Super Family, a personal friend, or a caring stranger- welcome to our family, and my journey.
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