Before Diagnoses
Jayla Celia Quinones, my beautiful little girl, was born right on her due date, August 25, 2020, in the middle of a worldwide pandemic. She was perfect, she was healthy and she completed our little family. Everything was fine until she was around 5 months which was when I noticed that she had vomited more forcefully than I was used to. With my two previous children, they of course would throw up here and there but again not as forceful. I took her to urgent care February 9, 2021. Since it didn’t continue and she wasn’t projectile vomiting they couldn’t really tell me anything. April 5th, 2021, she suddenly had a fever. No other symptoms, took her again to urgent care, they tested her for covid & flu and both were negative. Her fever lasted a week with no other symptoms. A couple of days after her fever I noticed that she didn’t want to roll anymore, she didn’t want to be on tummy time, she felt more like a newborn and couldn’t bear weight on her legs. I took her to her pediatrician and she recommended that we go to the ER which we did.
On April 17, 2021 I took her to the ER at Maria Fareri Children’s Hospital. She stood in the hospital for 5 days. They checked her blood, her urine, they performed an MRI of the brain, a spinal tap, a chest x-ray and nothing. All they saw was that her lymph nodes were slightly inflamed but they told me since she just got over a fever, that could've been the cause. They did give me a number for the oncology dept if needed depending on the extra blood work they had performed. When I called several days later, I was told everything was normal. Jayla was also back to normal, sitting up, bearing weight on her legs and rolling around.
The end of June is when I noticed she didn’t really want to eat as much as before. She would breastfeed fine but ended up gagging with solid foods. Her pediatrician did say it could be because of teething but to still offer her foods 3 times a day.
July 2021 is when I knew something was seriously wrong, again she was vomiting forcefully and had diarrhea. I took her again to the Dr. (her normal pediatrician was out) and was told it could be muscular dystrophy, a gastrointestinal problem, or even teething. He had blood work done and when I inquired about the results he told me her results are "OK" and that the only thing was that her protein was low. Not comfortable with the answer, "OK", I then looked up her results and almost everything was outside of normal range. During this time I made an appointment for her to see a GI Doctor and I also took Jayla to a pediatric chiropractor two separate times to find out if there was anything else I can do for her. Her chiropractor expressed the same concern I had and also felt her blood work was not normal. Additionally during this same week in July I was in contact with a pediatric physical therapy center to see if Jayla needed extra help in movement and/or eating. I eventually made another appointment that same week with her regular pediatrician to show her what I discovered. When she examined her, she immediately told me that she was retaining fluid in her legs, feet, and belly and I should rush her to the ER. That was July 23, 2021, that night, our lives changed forever.