Tag Archives: disabilities

February 12, 2015

My parents are right (how annoying!) – I only post when something is going wrong or has changed for the worst for Ben.

When Ben learns something new or improves a skill, we celebrate it but for some reason I don’t describe here how wonderful it is.  Instead I leave this page for the downward turns and spirals that impact his day to day.

Ben’s seizures are changing.  This is not uncommon for anyone who has any kind of seizure disorder and there are many factors that can contribute to it.  Growth, general deveopment, age, health, neurlogical changes (and those are just the ones I’m aware of).

It’s scary though.  Ben has been “stable” for nearly two years.  His health has been moderately well since our foot fiasco in May 2013 and we feel like we have a pretty good hold on how to address his health.  We haven’t been to seen his doctor since October; unheard of.  We usually have a standing appointment – monthly, sometimes bi-weekly, sometimes weekly depending on what’s going on.

It’s hard to allow myself and justify being upset because days like yesterday are expected but that’s my baby.  He is my six year old baby and he has the abilitiy to break my heart and affect me like no one else.  I constantly worry for him but use that worry as means to push on through and as a force to ensurethat his quality of life is amazing.
The rational parent in me accepts that consistency is unattainable in the life of someone so medically fragile as Ben is.  But the optimist in me knows how strong he is and that he kicks major ass considering what he’s been dealt with.

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The Downside of Not Growing

The downside of Benjamin growing at such a slow rate is that when he does suddenly sprout an extra inch, his needs change dramatically.  This summer, Ben surpassed the “he’s still small enough to use an infant bucket seat” which was both awesome and scary.  Suddenly we needed new support equipment and FAST!

Hello fundrazr.com website!  In a week and a half we managed to raise enough money for Ben to get both a new reclining car seat which specifically addresses the needs of children with disabilities and for two new sleep systems (one for our house and one for the day home) – we are still incredibly grateful for everyone’s generosity.

Bug loves his car seat!  We had been borrowing one from his day program so we already knew how well it fit and how to adapt it properly but it still makes me smile when I watch him look out the window at the momentum passing by; I know he cannot really focus or see anything in particular when we’re moving but how fabulous is it that he’s even aware of outside (on the plane to Jamaica he also watched out the window).  Thank you for your help in obtaining this critical piece of equipment!

Now we’re onto sleeping and borrowing a Dakota chair from Home Care.  I have never seen him sleep so comfortably or stay warm like he has been the past few nights.  We can’t wait to meet with the company and get one made specifically to his size!

Dakota Chair Britax Car Seat Dakota Chair Britax Car Seat