Mercy was born October 17th, 2018 but was supposed to be
born on Halloween that year. Mercy came into this world butt
first and not crying by c-section and was 5lbs 13.2oz and
18.5 inches long; I had never held such a beautiful but yet so
tiny human being.
Things seemed well that night until I noticed
something was not right with Mercy, she started making weird
gestures with her lips, and then began frothing at the mouth; I noticed right away that she was choking/suffocating. I acted quickly I began to pat her on her back. Luckily for Mercy staff on duty and my quick actions saved her life a mucus plug had blocked her airway, but little did we know this was just the beginning for her struggles she would have.
Mercy would rapidly decline when it came to her weight she got down to 4lbs 9oz and would only get to 6lbs at 3 months old; we did 4 different hospital stays each a week long or little longer, and 6 different diet changes. I remember becoming skeptical of the scales at doctor’s office at one point so I bagged up some corn I had for hunting and took to work and weigh it and then when they weighed her at the doctors I asked if I could weigh the corn but they were pretty much the same weight. Her mom was depressed and broken mess which left me to keep the pieces together.
Mercy would go to the doctor twice a week every week and had numerous specialists appointments. I can’t say what clicked for her, she just started finally gaining and maintaining weight.
She dealt with so much so early on; she was considered deaf at first but come to find out she had fluid trapped behind her eardrums, she wouldn’t take her first steps till 2 weeks before her 2nd birthday, she has very poor eyesight, speech delays, cognitive delays, behavior disorders, it just seems like the list goes on.
Mercy, to me, is the very definition of why you don’t give up she just keeps proving specialists wrong; we were told by an orthopedics specialist she wouldn’t walk if she hadn’t by her 2nd birthday she suddenly decided to take those steps two weeks before her 2nd birthday;
we were told if the surgery to fix her ears didn’t work she may never hear she hears fine now;
we were told over and over if this diet change didn’t work her future would be bleak but here she is just trucking along.
The day we received her diagnosis of KBG was truly
just relief for me it was never anything we or were
going to do she was always going to struggle because
as good as doctors and family are they are judgmental
and condescending and was just like see I told you
there was something wrong!!
Mercy is now 3 attends school twice a week and
receives speech, occupational, physical therapy, she
loves to sing, dance, spend time with mommy and daddy.
Anyway that’s Mercy’s story and I’m glad I got the chance to tell you about her!!
Diagnosed September 2021
Everyone has a story to tell, here's some of ours. Whether diagnosed early or diagnosed decades later, each KBG story is as unique as their fingerprints (yes, we do have fingerprints).