Jenna is a spunky little six year-old who was born with a triple intestinal atresia, which, in plain English, means her small intestine wasn’t formed correctly and wasn’t fully connected. She had surgery when she was only two days old and ended up with only about half the normal length of small intestine and a diagnosis of Short Bowel Syndrome. She has a g-tube that we feed her through, although she can eat by mouth if she’s in the mood or hungry enough. She still doesn’t know how to recognize the feeling of hunger and struggles with knowing how to chew and swallow. Most of her eating involves teensy, tiny nibbles of only a select few foods of choice.
She spent three months in the NICU and developed chronic lung problems somewhere along the way. She was diagnosed with Bronchopulmonary Dysplasia (aka Chronic Lung Disease), and is very susceptible to serious respiratory problems from a typical childhood cold or flu. On x-ray, her lungs look like those of an elderly, life-long smoker with emphysema, and she suffers from asthma. The human body is capable of regenerating lung tissue until around age 8, but no one knows how much her little body will be able to repair.
After we noticed more and more significant delays in major motor milestones, and she began complaining of foot and hip pain, we visited a long list of specialists who diagnosed her with Cerebral Palsy at age four. It primarily affects her lower extremities and is classified as “mild,” but presents significant challenges for her in daily activities including walking, strength and balance.
She has additionally been diagnosed with Sensory Processing Disorder and Developmental Dyspraxia. We attend regular physical and occupational therapy sessions to help with all of these areas, as well as a long list of pediatric specialists who track her progress.
Aside from all those medical and developmental labels, she is a little girl full of joy who loves to share it with the world. If she’s awake, she never stops talking, and she’s often too smart for her own good. She loves to boss anyone who will allow it and looks to be on track for ruling the world. We just hope to channel these skills for good and not evil. 🙂
I’m writing this blog to connect with other stay-at-home moms and journal about my own experiences. For those of you visiting with special needs children of your own, I have a weekly post on Sunday (Special Needs Sunday) that addresses some of the issues we’ve gone through. Hopefully, the information and experiences I share will help to make someone else’s journey a little bit easier.