Special Needs Dad 365

Trapped by the Clock
Ever since the day Livy was born, we have been living by the numbers. The easiest way to describe this is to list out the areas of our life that involve some type of count or measurement or time. So here goes, in no particular order:

  • Apgar scores that were low when Livy was born
  • Feeding times around the clock
  • Medication times around the clock
  • Blood levels for checking medications and body functions
  • Amount of water Livy needs to have each day in her blended food
  • How long to time a seizure before it is considered an emergency
  • All types of prevalence statistics involving epilepsy
  • Blood oxygen levels
  • Heart rate
  • Number of epilepsy medications she has/is taking
  • Number of medications she is taking to counteract the epilepsy medication side effects
  • School progress scores which are below average or non existent
  • Doctors’ and specialists’ phone numbers
  • Monthly dates and times when Livy has doctors appointments
  • Date and time Livy's nurse is coming for monthly blood draws
  • How many hours of sleep we don’t get anymore
  • The amount of money that insurance companies don’t cover for certain treatments, equipment, or therapies
  • The number of times we have been asked to sign a Do Not Resuscitate (DNR) while in the hospital
  • Number of handicap spots that are always taken when trying to park
  • Number of brain surgeries Livy has had
  • Tracking the number of seizures and the time at which they happen
  • How long we used to have to wait before administering her seizure rescue medication, again
  • Ending on a positive note...2, because having twins has been awesome and there are so many good things that have come from them!!

I could go on, but I think I have made my point. Having a child with special needs is definitely a game of numbers. Often, it’s like being trapped by the clock. Unfortunately, it’s a game that can have major consequences if the directions aren’t followed. In our house, it’s a team game. We try to keep track of the numbers together. It seems that’s the best way to make sure we come out on top in the end.