Abby and Aly’s Story
Hello UFR friends!
My name is Abby Puckett. My husband, Jamie, and I have 3 children: oldest son Greysen (24), daughter Aly (22) and youngest son Garrett (17). At Aly’s one year checkup it was suggested she have a cat scan (CT) of her brain because her circumference of her head had gone substantially off the curve since her 9-month checkup. Interestingly, Aly was developing as a “normal” one year old and hitting all of her milestones. In hindsight I guess she did sleep a lot, but when you have a 2-year boy who is super active I looked at all the naps as a blessing!
We obliged and scheduled the CT and as many of you know the prep work and sedation for these is worse than the actual imaging itself. We arrived at the hospital thinking this would be a routine procedure and would be home later that day continuing on with our regular day to day family life. However, this proved not to be the case. While Aly was in the imaging room, my husband and I waited patiently in the hall where we could see through the glass window the CT being done. Then I notice a tech picking up the phone and within moments a radiologist coming down the hall. I knew in that moment something wasn’t “right”. It is so real how we have a “mommy instinct or gut feeling” about things. From this moment on it was like a whirlwind. We quickly learned they were going to be taking Aly for an MRI to investigate findings on the CT. We learned her brain CT showed her sweet little brain full of spinal fluid with her brain matter squished against her skull; however, they needed to determine why this was the case. The MRI would give further detail. We found out later that day Aly had Dandy-Walker Syndrome which was the reasoning behind her development of hydrocephalus. Dandy-Walker has many components and one is hydrocephalus. Her neurosurgeon ended up calling it Dandy-Walker variant because she only had one of the many components of Dandy Walker (cognitive delays, heart defects, 6 fingers and 6 toes and hydrocephalus being the main ones).
Interesting how life can literally change on a dime. Life is a gift and when we still have a breath to breathe and a heart that beats, we have a purpose and our story is not finished. Once this diagnosis was made, we had an appointment the next day with a neurosurgeon at the Children’s Hospital. It was told to us that Aly would need to have a shunt placed in her brain to drain all the excess spinal fluid her body is producing and there was no cure for this diagnosis. We were educated within hours of what this was all about and put it all into God’s hands as we knew He was the author of life and had full say in Aly’s purpose. We quickly came to grasp that this was a condition she would live with and the shunt is what would keep her living; however, knowing this was a device we knew there could be hic-cups and risks and such along the journey. Some have none or few and others have many!
Aly had her shunt placed and did very well with the surgery and recovery. I will tell you from the parent’s side it was so scary seeing your one-year-old being wheeled off knowing they were doing brain surgery on her. The word is just so scary and intimidating, but when you don’t really have any options, you pray and trust.
Aly is now 22 years old and just graduated from college and landed her first job which she will start in June 2023. Looking at her would never know what she has battled and been through in the last 21 years. She has had 10 brain surgeries/revisions and has been through more than most 22 year old’s, but she would not trade it for the world as she knows this is who she was created to be and will continue to use her story to shine light on her creator and her purpose that He has called her to.
What we have learned in this journey is never take a day for granted and show up and be there for others. Our story can help others just as others have guided us and given us hope and direction on difficult days.