About the Notebook
An Evoloution: from Data to Diagnosis
Shane’s notebook began as a handwritten compilation of every symptom he experienced after the first day of seizures on August 4th, 2003. At the time, the doctors were not happy that I “diagnosed” Shane with seizures. I was discouraged from calling each episode of decreased breathing or “apnea” a seizure. To me, every time it happened though, the poor child looked like his brain was short-circuiting! It was a horrifying experience to watch since I was helpless to stop it. As the symptoms progressed, I was rageful that the hospital doctors could only shrug their shoulders.
As an IT secretary, I learned a lot about data collection and proving my case with documentation. So, I resorted to the only thing I knew in order to make the doctors listen to me (just another young ’mom’). I created a written record and took statistical data. I gave them measurable proof. I knew I had to appeal to the analytical collective of medical minds to ever hope of engaging them to solve the problem, or at the very least provide me with a reason why it was happening.
I kept notes on looseleaf paper, writing down the interval and duration of the seizures. After every visit to the pediatrician or the hospital, I wrote down the procedures performed, scripts & meds dispensed (prescriptions & medications), and Shane’s stats & vitals (height, weight, temperature, blood oxygen saturations – or ‘sats’). These anecdotal and statistical pages became my speed pass at the Emergency Room! All I had to do was whip out the last few pages, show them to the triage nurse on duty, and we’d be through the doorway in a matter of minutes. The pages also spared me massive amounts of frustration when new medical team members arrived on the scene. They came to appreciate my ‘crib notes’ and it established a respectful manner of relating to each other.
Once the neurologists became involved and more medications were being given, I began to search the internet and read every thing I could about the symptoms. When the neuro team decided to blood-test my husband and me for genetic conditions, my researching began in earnest. At first, the neurologists thought Shane had Canavan’s disease, but upon receiving the blood-test results, it was confirmed that he was born with Sandhoff’s Disease. I ran home to search the internet – and sure enough, every single symptom Shane had was right there, in black and white. We were devastated.
After receiving a diagnosis within 4 weeks, I came to understand that it was a luxury and certainly not a normal occurrence. Some parents we shared hospital rooms with had children with debilitating chronic conditions, and still no diagnosis two years later.
As time wore on, I added a contact directory filled with phone numbers and addresses of doctors, pharmacists, therapists, insurances, home health staffing agencies, and medical supply companies so that I could find what I needed. With help from my boss at work (an IT department director), I even posted this information to an online version so that I could access it from work or anywhere else I could find an internet connection. It made making and returning phone calls a breeze since I was able to stay on top of developments and supply deliveries during the course of a day. You can view this website here: http://www.shanesnotebook.com . You can also read more about the disease and its etymology.
Paying it Forward
While Shane lay home dying in our front living room, we had the privilege of meeting some of the kindest and warmest people on the planet in the form of his nurses and therapists. Shane survived on donations from these silent angels almost a year before I really knew what was going on. This includes things like syringes, g-tube (feeding tube) kits, and even a specially equipped wheel-chair. It is because of the generosity and love from them that I am compelled to share it through Shanesnotebook.org.
The ultimate goal is to establish this site as a portal for support to families facing the hardships and pain of a developmentally delayed or chronic care child. Very soon, Shane’s Notebook will be a non-profit entity that will gather supplies and equipment for medically ill children as well as educate parents on how to advocate for their child. In addition honoring Shane’s memory , the organization will create awareness for developmentally delayed children by fundraising for scholarships & grants to benefit autistic student therapies and supplemental school programs.
Eating a cookie. January 2003
