Gabriel

2021 EMBRACING BRAVE Denver Spring Recipient

Shortly after Gabriel was born we noticed Gabriel had what we were calling "tic's". Our pediatrician at that time told us it was acid reflux and put him on a med to see if it resolved.  It didn't.  Then, when he was 8 months old the "tic's" got worse and he was struggling to track things with his eyes.  At that time our pediatrician referred us out to a neurologist at Children's and an eye doctor.  

We went to see the eye doctor in June of 2018 and after examining his eyes, she said that structurally he looked great but did notice the lack of tracking.  She asked me if there was anything else going on that I felt worried about.  I told her about these "tic's" and showed her a video.  She looked at me with tears in her eyes and said, "Oh sweet mama, those are seizures.  Have you seen a neurologist yet?"  As you can imagine I was terrified and told her we had an appointment with one but it was still a month away.  I asked her what she recommended I do and she said that if he had another one that knocked him out/ made him really sleepy, that I needed to take him to the emergency room immediately.  

Sure enough he had one the next day and off to the emergency room we went.  The whole staff in the emergency room ran into our room after he had one. We were admitted overnight, an EEG was run, and the next morning we were told that our sweet son had "infantile spasms" and "tonic seizures" and would potentially have the epilepsy diagnosis for the rest of his life.  Being new to the epilepsy world we were very confused and tried our best to make an educated decision about which medicines to try first.  After learning how to dose the meds (1 was a shot we were to give every other day) we were sent home with a long list of instructions  around what we were to come back for, should we notice it.  

A week later we noticed Gabriel was pooling secretions in his throat and sounded like a percolator.  He also appeared to be having trouble breathing.  This was one of the symptoms to come back for.  I called the Children's nurse line and after doing an over the phone assessment we were instructed to call 911.  They took us to a hospital close to our home, who didn't understand his diagnosis well, and then after much pleading and begging, they transferred us to Children's where we spent the next week in the PICU and learned more unexpected new things.  During this stay we discovered that Gabriel was aspirating on breastmilk and his own secretions.  They gave us a thickener that was effective for awhile but in November of 2019 we discovered that the aspirations were getting worse and so began our journey in the "tubie life"!  

A g-tube was placed in January 2020, which worked great until recently when Gabriel was still struggling with stomach aches and reflux and was switched to a G-J tube.  In October when he turned 3, his diagnoses changed to "Lennox Gastaut Syndrome".  This is a rare form of incurable epilepsy, meaning that there is not a medicine that will cure all of the seizures.  To this day, Gabriel has anywhere from 5-10 seizures per day and up to 10ish spasms per day.  This is his normal, and while it sounds scary to others, for us, we have learned to cope with it.  

Not only did God give us this amazing child, but he created him to be such a fighter.  Despite his daily seizures, cortical visual impairment, and severe developmental delays, Gabriel is a spunky, sweet, smart 3 year old with a killer sense of humor.  He loves to use his talker and joke with his family, friends, teachers, and therapists regularly.  He also loves to go on bike rides, walks, and just generally be outside all day if allowed. We hope and pray for a cure some day, but also that his story will continue to touch others in any way possible. 
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