Severe Autism With Intellectual Disability And Epilepsy Can Be Tough But It's Still a Wonderful World

My Son Conor Wore The Blue on World Autism Awareness Day

I understand some of the criticisms of the day and of thinking that

wearing a color in itself creates autism awareness but as long as people 

raise real autism awareness of the challenges of autism disorders and  the related 

conditions from which so many suffer including self injurious behavior, intellectual disability, epilepsy 

and depression;  that's all I look for and it is what I try to do  365 days a year.

Caring for, advocating for, fighting for my son with severe autism disorder, intellectual disability, tonic clonic seizures and life threatening adverse reactions to an ever changing seizure meds scheme will not bring me down. My son is worth every minute of my time and effort and at the end of each day I believe its a wonderful world and will do my best tomorrow to help my Conor enjoy it as much as I do.

Conor One Year Later!

Above: Conor this morning before Mom drove him to school  at the Leo Hayes High School Resource Centre.  Mom and Dad are very happy to have our Conor with us healthy and happy.  

Below: One year ago Conor was in the Intensive Care Unit of the Chalmer's Hospital for 6 days where he was unconscious for most of the first 3 days during an adverse reaction to his seizure medication at that time. We can't say thank you often enough to our family doctor and the emergency room and intensive care units at the Chalmers for giving us our Conor back.

Conor Recovery ... For Dad ... Means Walking On The Trail Again

We have been very happy with the excellent care Conor received after his adverse drug reaction. Everyone involved, from our family doctor who saw us very quickly after our concerns arose, immediately advised cutting back on Conor's meds and was at the ICU and pediatric wards as part of his treatment team to the doctors, nurses, technicians, physiotherapists and all staff at the emergency, ICU and pediatric ward teams. All were terrific in ensuring Conor's recovery. Everybody was top notch and we are grateful for their service to our son. 

Each day of progress brought fresh signs and while some work remains overall his progress has been great. This afternoon he and I walked the trail to the Superstore for an OJ treat and return home. The Run Jump Fly boy has not returned ... yet ... but Conor kept a brisk walking pace and Dad was very hard pressed to keep up ... another great sign of Conor's recovery progress.

In the top picture below the white building with yellow trim in the center of the photo is the hospital, the DECH, where Conor was treated a few weeks ago. 

 A long time ago in a universe far, far away.

Extremely Grateful

The Intensive Care Unit of the Dr. Everett Chalmers Hospital in Fredericton made a difference for our family.  They saved our son Conor's life after he suffered an adverse reaction to new anti seizure medication.  They gave our son back to us. For that we are, as the CBC caption underneath the audio of my interview in support of the ICU campaign to raise funds for new monitoring equipment put it ... extremely grateful. 

As we understood it Conor's muscles were breaking down and releasing proteins that were very dangerous to his kidneys. The ICU team were monitoring him constantly while flushing the meds out of his system, taking blood samples and other tests and examinations and starting him on the road to recovery.  

Conor spent 6 days in the ICU with his mother beside him where she slept on a cot for the  entire stay.   During those six days the ICU doctors and nurses were reading his vital information in the room he was in and at the large desk area outside the patients' room.  This monitoring equipment is 10 years old and needs replacement.  If you can help the ICU team save lives   please do so by contributing at the Chalmers Foundation. 

Audiotape of my interview by CBC's Terry Seguin yesterday in support of the campaign to raise funds for new monitoring equipment for the Chalmers' ICU:

Conor at the Chalmers Hospital's Intensive Care Unit 

In the left of the photo above you can see some of the 10 year old 
monitoring equipment that the ICU team used to save Conor's life.

Conor home and happy after his first day back at the swimming pool as part
of his school recreation activities. We asked his school assistant to take him only in to the shallow end but Conor had none of that and went to the deep end, swimming, jumping off the diving board and going up and down the large slide.

Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!

In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity.  Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012.  Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed.  Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU.  Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be.  Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.  

To everyone involved with protecting and saving our buddy Conor his Mom and Dad say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy: