Juana’s journey started on June 14, 2018, when she came into this world to meet her parents and siblings, Gabriela (9 yrs.), Jennifer (12 yrs.) and Fernando (10 yrs.) in Houston, Texas. During her pregnancy, Juana's mom says, all the ultrasounds were normal, and there were no issues or concerns. Her pregnancy felt as normal as her previous pregnancies, none of which had been premature. As a matter of fact, she remembers that every time there was an ultrasound done, Juana was a busy body and the specialist could never get the sex of the child. Juana's parents were overjoyed with happiness to add another daughter to their family when they finally learned she was a girl!
Juana was born premature at 32 weeks with Myasthenia Gravis, congenital heart disease, dysphagia, global developmental delay and reactive airway disease, all of which caused her to become trach and vent dependent. She remained in the NICU for 6 months, during which time she had a trach and g-button placed.
It was a difficult period and a big challenge for Juana's parents when they were not able to bring their little girl home after birth. They had never experienced this before, as their other children had been healthy and went home soon after birth. It was very difficult and challenging to be at the hospital with Juana and tend to the rest of the family's needs as well.
Today, Juana is a strong and determined little girl who is challenged daily with the increased milestones that she strives for. At 16 months of age, under a physician's order, she was able to wean off the ventilator for 2 hours each morning and 2 hours each evening while wearing her heat and moisture exchange "HME" supply piece. She has gradually increased those hours to where she currently is off the ventilator for 6 hours each morning and 5 hours each evening. She sleeps all night with the ventilator for rest and continues to strive for success each day.
Juana’s favorite thing to do is to watch toddler videos, and she loves to sing! This is a challenge she faces every day because she tries to keep up with her energy level and loves it so much. She wears a trach speaking valve as tolerated (sometimes up to 2 hours) while she is not on the ventilator and enjoys the humming of the music and participates with her hands and toes. Her favorite song is “Baby Shark”.
During Covid-19, Juana has not had her normal OT/PT therapies, but her homecare nurse, Alicia, has been an amazing help for Juana to reach the goals of keeping her standing and walking. She even tries to run too! The nurse feels since her muscle tone control has improved, she has really achieved more every day. Juana's mom is so amazed to see her progress. The smile on her daughter’s face makes her day complete with happiness.
The Torres family takes things day by day and hope for the best for their daughter’s future. Every day Mom is proud to see the efforts that Juana is putting forth towards reaching her goals. Her wish is for continued prayers for Juana to reach her goals to be off of the ventilator, decannulated and to live as normal life as possible.