Just a glimpse into taking care of our son...

Taking care of Hayden is a 24/7 job.  Tim & I  literally have to trade off sometimes because we literally get w-o-r-n out.
This is just a window into a short day...
Hayden gets up by 7am (or earlier).  He heads straight to the freezer to find his pancakes--this is pretty much the only thing that he likes to eat for breakfast. Hayden gets a pile of meds by 7:30...it is a shame that a six year little boy has to take so many medications....take a peak...

This is Hayden's medication pile...we fix up Hayden's meds on a weekly basis & that way we know when meds need to be refilled.  Our pharmacy usually gives me a big bag when I pick up all the refills.

In regards to medications...yes, Hayden takes a lot of meds; yes, he takes meds three times a day to prevent seizure & even at school; yes, we work to reduce the number/amount of medications Hayden takes with his neurologist...but sometimes that is a losing battle & Hayden doesn't respond to a plan wean off of a medication & then we know that Hayden's body needs to be on that particle amount of medication.  When Hayden has a doctors appointment, I typically go with a print off of all of medications & the times of day he takes the medication...it never fails, his medication list always gets messed up & if Hayden gets admitted to a hospital I have to go round & round to get the doses corrected.  But I am learning to take all of Hayden's medications with me when there is even a shadow of question of the possibility of a hospital admission.  Thankfully, those are far & few between.


We get Hayden ready for school & he is out the door heading to school by 7:30 a.m.  We are very grateful that Hayden has a full school day programming as well as transportation to & from school.
Hayden arrives home form school by 3:45 pm & he is a ball full of ENERGY!!!
It is truly an orchestrated event to keep Hayden safe & the furniture intact from 4-7:30 pm each night.  Hayden has his circuit that he makes from the sofa, the recliner, the floor to his bed through the kitchen & back again.  Hayden currently likes to stand on his head &/or doing somersaults across the floor.  I will admit....it is quite annoying & we do worry about A LOT about Hayden's safety, but just like a monkey the boy is quick!!

Hayden doesn't hold out to eat supper much beyond 6pm & please don't pull out any fine china nor Corelle if you invite us over.  Hayden likes to spin plates like tops or throw them to the floor.  Keep in mind it is a struggle many times to get Hayden to eat correctly.  It is actually, pretty gross to someone who doesn't know Hayden.  He is famous for stuffing his mouth & chewing little...he has choked several times.
We count down the minutes until 7pm when Hayden gets his bedtime medications.  Once he finally settles down for the night, someone needs to stay close to watch for the dang seizures while the other gets things together for the next day.
Watching from the outside, our life probably looks chaotic...but to us it an orchestrated event.

We were recently interviewed by our local newspaper about Project LifeSaver a devise that we are awaiting the arrival to help track Hayden if he gets away from us.