Grayson
Grayson was born at full term on October 17th of 2022, at our local Hospital here in Fauquier, Virginia. My pregnancy was perfectly healthy and all was normal. He was the perfect size (maybe even a bit too big), growing beautifully and so active. My body went into labor naturally and Grayson took his first breath at 3:11 pm. My world felt complete. I remeber being so mesmerized as his big, bright blue eyes looking straight into mine and being in complete disbelief at the amount of hair he had.
As the minutes went on, Graysons work of breathing began to increase. They had suspicion that he may had aspirated on his meconium and later, a chest xray had confirmed just that. He was placed on Cpap and transferred to The University of Virginia Children’s hospital. What we thought was going to be a 48 hour stay in the NICU, turned out being several weeks long. They team pointed out how Grayson had several abnormal features that led them to believe he may have some underlying condition. They put in an order and had labs drawn to run genetic testing.
After being able to breathe sufficiently on his own, and ruling out all the scary things of concern based on how he presented anatomically, we discovered he was having issues with aspirating when offered a bottle. We did lots of trials and tribulations and finally decided to get a G tube placed in order to bring our boy home. Grayson was discharged from the NICU on November 12th of 2022. He was home for one week before being admitted to INOVA Fairfax’s Children’s hospital for failure to thrive. Grayson was steadily loosing weight and vomiting what seemed like 24 hours of the day. We discovered Grayson had motility issues which caused his stomach to have delayed gastric emptying. After several weeks and more trials and tribulations, they sent Grayson home on a ND tube while waiting for his stoma site to mature so that he could get a GJ tube placed.
This was life changing. He did a complete 360.
We’ve hit several small bumps throughout his journey but overall, Graysons biggest challenge is feeding.
In August of 2023, we received a call from his geneticist. I remeber receiving his diagnosis, and my heart nearly stopped. It was like my whole world was turned upside down. Many children with Bohring-Opitz syndrome don’t live past infancy and at best, early childhood. We are now on Graysons 3rd year of life and the things he has accomplished feel like miracles. With lots of work from speech, he was able to pass a swallow study shortly after his first birthday and has been cleared to eat by mouth since. He is working hard at using a device to communicate. He attends physical and occupational therapy and is in the process of learning to walk with the assistance of a gait trainer. He is able to sit up with no assistance and is able to pull to stand independently. He has a passion for chewing on anything he can get his hands on. He is the happiest, most loving boy and more than I could have ever asked for. In my eyes, he moves mountains. We were told he would never be able to cross midline and pass toys between hands, but he successfully does this on the daily.
My biggest advice to families going through this, whether you have been living it or are just beginning this journey, is to never loose hope. Grieving a living child is real and raw. It’s frustrating. It’s shattering, at times it feels unbearable. But never loose hope. Take it day by day, minute by minute and sometimes second by second. I often tell others that Grayson made me more human and alive than I could have ever dreamt of. I think I needed him more than he will ever need me.
