I spent the first 2 months of my life in Children's Mercy NICU when I was born. Going home my doctors had placed me on oxygen and a gastrostomy tube or "g-tube" for feeding. I even had two surgeries before I was 2 months old. This is perfectly normal for kids like me. My first surgery was on my airway due to me not breathing when I was born. This led to me being on a ventilator for the first 3 weeks of my life. My second surgery was on my g-tube since I have a gag reflex it’s not easy for me just to eat by mouth.
Due to my chromosome deletion, I’m just a little delayed at learning. This was never a problem for me. I've always been determined with the help and support of my family and doctors. I was beyond ready to achieve any goals that were thrown my way.
On Wednesdays, I had occupational therapy and physical therapy. My occupational therapist worked with me on learning to suck my binky, tummy time, and loosening up all my muscles. This past Wednesday (Oct. 14), I made the biggest accomplishment. I learned how to suck my binky! My Doctors and therapist always told me I was a strong baby. Also feisty, because I didn’t like tummy time at all or this nasal canola on my face. Unfortunately, that would be the end of all my accomplishments. Saturday morning (Oct. 17), my life came to an end.
Please help my family and friends bury me.
- Shawn Thompson
- Mmela & Felicia Misomali
- Tanya Warren
- Laurie Crockett
Organizer and beneficiary
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