Morgan

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Morgan

Located: United States

Symptoms: Attention issues, Behavioral issues, Cerebral palsy, Constipation, Eczema, Febrile seizures (as an infant), Global developmental delays, Hypotonia, Intellectual disability, Low muscle tone, Overgrowth/tall stature

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Morgan was born three and a half weeks premature via C-section (6 lbs 4 oz and 19.5 inches) and was a rock star through an extremely difficult delivery (mother’s health issues: hypertension). Her APGAR scores were normal, new-born tests regular, and she got to go home in two days.

Morgan was a very happy little baby who achieved all her early milestones (smiling, sleeping through the night, eating, waving) at a typical age. At four months, she was diagnosed with congenital torticollis and began seeing a physical therapist for treatment. She progressed through sitting, crawling, and talking milestones at age-appropriate levels, but it was clear that her muscle tone and strength were not that of a typical infant. Her physical therapist suggested continued treatment to follow her as she grew. Morgan walked at 18 months with the help of SMOs.

At one year, Morgan’s height and weight fully caught up from being a “preemie” and was 23 lbs 15 oz and 32 inches tall. She loved to mimic everyone she met and was able to say “dada” and “mama.” She had 10 teeth (including two molars) and ate typical food and drank from a sippy cup.

At two years, Morgan had the most loving and friendly personality. Her facial expressions and ability to “act” were uncanny, but her speech and other developmental goals had started to fall behind. Early intervention through the County Regional Center was started with physical, speech, and occupational therapies. Previously a 12-hour-a-night sleeper, Morgan began to develop sleep issues and would wake in the middle of the night for hours at a time. Her growth started to dramatically exceed those of typical peers and was 31 lbs and 38 inches tall (99th percentile).

At three years, Morgan was classified with “global developmental delays” by her neurologist and cerebral palsy by her orthopedic specialist, and she was enrolled in the special education preschool program through the local school district. She continued to be a bright, outgoing, and very charismatic little girl, but began to have behavioral issues in preschool and with peers (biting, pushing, etc.). Her speech and other skills continued to progress (using two- to three-word phrases) but at a much slower pace.

At four years, Morgan struggled with learning age-appropriate tasks (potty training, peer-to-peer interactions, pretend play) and started showing more aggressive behaviors. She had obsessions with odd items (kitchen sponges) but loved music, books, and anything related to movies/TV. She started using full AFOs for leg gait and pronation, which dramatically helped with her balance. She was officially transitioned from diapers to underwear but had frequent accidents (still does to this day). Sleep continued to be a major problem.

At five years, Morgan started music therapy, adaptive dance class, swim lessons, and ski lessons. All were great forms of exercise and social interaction. She continued in special education preschool and private (mainstream) daycare with success. Morgan struggled with constipation but was otherwise an extremely healthy little girl, rarely even getting sick.

At six years (2018), Morgan and family participated in a whole exome genetic sequencing test. The results showed a de novo mutation in the DNMT3A gene (TBRS). Her diagnosis was formally changed to cerebral palsy due to a genetic disorder. Morgan started kindergarten and continued to develop and learn but at a very reduced rate. Morgan’s parents conducted a formal sleep-training program with great success, resulting in Morgan sleeping 10–12 hours again. The family also dramatically changed their diet to a Paleo style, which resulted in big improvements for Morgan including in weight loss, constipation, behavioral issues, and skin conditions (eczema).

At seven years, Morgan has continued therapies (speech, occupational, physical) both privately and through the school district as she has transitioned to elementary school and is currently in first grade in a special education day program. Developmentally she has been graded at a 3.5–4.5-year-old cognitive ability. She still wears orthotic devices to help improve her gait and requires 24–7 supervision to do all other activities. Private ABA therapy was started about six months ago and continues to be a major focus of her education as avoidance, non-compliance, and communication in school have been obstacles in her learning.

Morgan is extremely bright and observant. She will be the first one to notice your haircut or compliment you on your nail polish or a new outfit. This skill is a great interpersonal tactic she has developed to relate to other people (especially adults) but is also a hindrance to her learning. She tries to get around doing tasks that are difficult for her (fine motor, schoolwork) and results in negative behaviors when she gets frustrated or is made to stay on task. Her inability to focus or maintain attention to any task is a struggle, although she has not been formally diagnosed with ADD. She continues to be the tallest in her class. At her annual check-up she measured 4’7” and 81 lbs.

Overall, Morgan is full of energy and is a positive spirit. She loves to meet new people and is extremely outgoing. She has a passion for music, movies, and books. She has a great ability to memorize storylines, quotes, or lyrics, and learns things well by associating them with a song. She loves to be the center of attention and will chat your ear off about random topics like dresses, jewelry, and animals. Her favorite activities include running (playing chase), bike riding with dad (tandem), horseback riding (adaptive lessons), looking for bugs, and camping. She has an incredible palate and will eat anything (sushi is her favorite) but also has an insatiable appetite and will eat non-stop unless prevented. She is incredibly compassionate and will be the first one to help a sad friend or get you a band-aid. When you meet Morgan be sure to ask for a hug, she gives the best ones!

Written by her mom, Erin Rooker