Monica Jennings
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Monica is 5 yrs old. Born April 1994 after a pregnancy complicated by massive polyhydraminos (too much amniotic fluid). Spent her first 6 weeks in NICU and hospitalized until she was 6 months old. She's had a trach since she was 4 weeks old due to her inability to swallow. At 2 1/2 yrs old Monica was diagnosed with Velo Cardio Facial Syndrome (VCFS), which is a micro deletion of Chromosome 22q11.2.
She has been tube fed since birth - by GJtube until a nissen fundoplication successfully eliminated GI reflux at 2 1/2 yrs old and is now fed via gtube. She would eat if she could, she loves to taste all kinds of foods. She has chronic lung disease because she aspirates her own secretions, hypoparathyroidism, hypertension and has had a recent seizure episode. She has hypernasal speech which makes her somewhat difficult to understand at times. She began learning sign language at 9 months and was not able to speak until she was nearly 2 1/2 years old. Monica is a very bright 5 year old. She has just started kindergarten in a regular classroom setting. She receives speech and physical therapy outside classroom time so that she can fully participate. Monica is very social and makes friends easily. Monica has had a trach all of her life and it is part of who she is. When she first began drawing her name she always made the "o" in Monica into a face with curly hair and a trach!
I often tell people that Monica is just like any other 5 year old, but with a trach. She loves to play with her cousin Scot, who is more like a sibling. She likes to go shopping and pick out her own clothes. She loves to read books and often falls to sleep reading to herself. She takes ballet and really loves to twirl and stand on tiptoe.
Monica is also as mischievous as the next kid and is always trying to get away with something new!
Unfortunately, Monica also gets sick often and is hospitalized several times a year. It doesn't seem to bother her, she loves the nurses and doctors and is very comfortable with them. She participates in her care and knows how to turn on and off her equipment and lets us know if she needs a neb treatment of some chest physiotherapy.
Monica is just a very special child who always teaches us some wonderful lessons about challenges, ability and disability, health and illness, love and caring.
- Lisa Jennings
Weymouth, MA
