The “Katie Khronicles”

A warm welcome to everyone reading this first Blog posting of the “Katie Khronicles”   on the CT Disabilities Connections website. I’m very excited to give people a glimpse into our family life as my husband and I care for Katie, our beautiful 12 year old daughter with both severe Cerebral Palsy and a seizure disorder. Katie’s story and experiences will serve as the platform to cover to a wide range of topics related to the world of disabilities and we hope that you will enjoy reading them and will also respond with your own thoughts, insights and experiences.  

 

There are times when life gets challenging (e.g. just about every day to varying degrees) and I sometimes find myself wish with all my heart that she was like other children her age. However, I know that, short of a miracle happening, this is and will not be the reality for Katie. Therefore, we simply move forward day by day continuing to love and care for her as just she is –  a sweet, non-verbal young girl whose personality shines through the many physical and cognitive challenges that have affected her since birth.

 

It’s ironic that I am beginning this blog two weeks before Katie is scheduled to have spinal fusion surgery. Scoliosis is one of the many cruel side effects of Cerebral Palsy (a condition caused by a stroke either before or after birth). Children with this condition usually have a stronger side and a weaker side of their body and physical development is often unequal on each side due to the brain damage. After twelve years of growing like a weed, the curvature of Katie’s spine has become so severe that it is beginning to compromise her lung function / ability to breath as well as negatively impact her digestive system and bladder. The only way to permanently correct the condition and its resulting problems is through this major surgery.

 

This procedure will be the biggest challenge and will pose the biggest risk of Katie’s young life to date and I am scared. There are no training manuals to help prepare us for what is coming. I have a couple of friends whose children had this surgery and did very well. These friends faced the same agonizing decisions as my husband and I are facing right now – is this the right thing to do? Is this going to make things worse or will it be too much for her little body and she………

 

Or, as she has done in the past, will Katie surprise all of us and do better than expected. These questions can’t be answered until well after the surgery. So I wait, try not to think about the future too much and pray, pray, pray.

 

On Wednesday, Katie will have the required pre-surgery physical exam. We will meet with the surgical team and, if they feel she is currently strong enough to undergo the two separate fusion procedures, we then continue with the preparations. If not and they decide to not go forward with the surgery, then I don’t know what’s next because we still have the same major problem with no apparent viable solutions.