Tuesday, March 17, 2015

Welcome to Jacob's Healing Rooms!

Welcome!


Meet Jacob.


Jacob is my hero and my daily source of inspiration. On the surface he looks like every other 11 year old boy, but it is clear that he is super-extraordinary. Up until 2.5yrs ago, Jacob was a healthy boy living with epilepsy. Then one day, we woke up to a "whole new world". This blog will share the ups and downs of Jacob's journey with Crohn's Disease. At times I will be writing as Jacob's mom, and other times Jacob will be writing his posts himself. Our goal being to not only raise awareness on life as a child with Crohn's Disease, but to share Jacob's wish with the world. 

Jacob never surprises anyone he meets with his awesome ideas on how he's going to change the world. So it was no surprise when for Christmas this year he approached me with a fantastic thing he wanted to add to his Christmas Wish List. He asked me;
Mom, I really want to make the treatment rooms at the hospital child-friendly. Can we do this?

How could I say no? So with tears of proudness in my eyes, I said "let's get it done."

Jacob has spent a fair amount of time in the treatment rooms at The Hospital for Sick Children when he's been well enough to receive treatment as an outpatient. Unfortunately, the medical short-stay unit treatment rooms are in a dire need of an upgrade. Jacob often says that he doesn't like going there because "there's nothing to do" and "it makes my spirits feel down in the dumps". As a parent, I can't argue this because I feel the same downward pull when entering the treatment rooms. Treatment rooms can accommodate up to 6 patients (and families) to receive simultaneous IV medications for up to 8 hours at a time. The room itself is quite plain, with only a few wall stickers to dress up the painted walls. There are two televisions suspended from the ceiling for all 6 patients to share, but even these are beyond the control of the children as the remotes are on short cables attached to the television. There is a patient playroom available, however not all patients can always go to the playroom or feel well enough to go. If there are no volunteers present, the playroom materials are often kept under lock & key. These child treatment rooms are not at all child-friendly.

Jacob's Healing Rooms is a fundraiser to raise money to give these rooms an update. Donations raised will be used to purchase tablets that will be permanently installed at each individual treatment chair. Children will at their own desire be able to access child-friendly mobile apps, e-mail, internet, etc. Jacob is also interested in providing each treatment room with a sensory machine for the younger kids, exploring the idea of having children magazine subscriptions, arts & crafts available, and even a fresh paint job.

Why does this matter you ask? It matters because in dealing with chronic illness it has been shown that children benefit in both body and spirit when they are distracted from their illness and treatments. An engaging environment tailored to the age group it serves, can provide this source of distraction as well as allowing other children to connect with each other so they don't feel alone in what they are going through. Through supporting the psycho-social & emotional aspects of life with a chronic illness, this project will have a great impact on healing and creating positive outcomes in these young people's lives.

In coming up with this amazing wish, Jacob has again shown us just what an amazing super-extraordinary young man he is. I hope that you look forward to our future blog posts as we continue to share Jacob's incredible healing journey with you all.