What Ruth Can Do

As of November 29, 2003




Gross Motor Semi-independent, virtually normal in a.m. Proximal weakness, very low tone in upper arms, shoulders, neck, jaw.
Item
Can Do
Working On It
Standing Stands in place for short periods Stands on one foot 5 sec
Walking Walks short distances Foot drop, unsteady on hilly terrain
Running Runs for 4-5 second bursts on flat, solid surface only Unsteady on uneven surfaces
Climbing Climbs furniture ok Requires assistance on playscapes
Fine Motor Better in a.m. Benefitted greatly from O.T. at early age.
Item
Can Do
Working On It
Grip Pencil grip, pulls better than pushes Poor grip strength, difficulty with scissors, tools.
Personal Care
Item
Can Do
Working On It
Getting Dressed Able to pull loose clothing on/off Difficulty with over-the-head shirts and dresses
Feeding Feeds herself 95% of the time Difficulty with chewy foods, straws, raising fork/cup when tired.
Toilet Training Goes by herself 99% of the time Perpetually constipated. Difficulty with passing stools.
Bathing Can climb into tub with assistance, sits in tub with ease Requires assistance with all aspects of bathing
School
Item
Can Do
Working On It
Transportation Takes a school van, with large car seat Unable to climb into std school bus
Classroom Integration Attends regular class, with one-on-one para-professional assistance Requires seat with back, assistance with travel between classrooms, alternative phys ed
Reading Age appropriate reading ability, high comprehension. Difficulty managing large books, lacks endurance.
Writing Age appropriate Difficulty with grasp, lacks endurance.
Arithmetic Very strong (credit computer games) Lacks endurance.
Social
Item
Can Do
Working On It
Language Ahead of peers in vocabulary, speech patterns, sentence structure Occasionally too verbal, especially during one-on-one.
Emotional Very emotionally empathetic, able to express complex (adult) emotions A bit of a wallflower, more of a watcher than a doer in large groups

Additional:

Ruth has low muscle tone in her legs and very low muscle tone in her upper body, especially her shoulders, neck and jaw. Ruth was almost three before developing a passable suck and swallow reflex.

Ruth has difficulty with such basics as eating, moving around unassisted, and clearing airway blockages.

Ruth does eat many normal foods, but has difficulty with chewy or hard items candy, steak or maybe a piece of raw broccoli. We supplement her oral feeding with PediaSure, a pediatric form of Ensure, a using an IV pump and a gastrointestinal tube. "G-Tubes" aren't as scary as they sound. Think of it as a gas tank. She loves her G-tube for keeping her alive and she has changed it herself when the retention balloon inside her stomach breaks -- brave girl. As Ruth grows, tend to use the IV pump because she's big enough to handle the feeds wide open.

When Ruth gets really exhausted she struggles to manage her own saliva. She is especially vulnerable to fevers, colds or infections which tax her metabolism, leaving her with little reserve for things like eating, drinking, coughing and managing secretions.

Ruth literally stopped cold once when she spiked a strong fever as an infant -- no breathing, no heartbeat. She also has endured numerous respiratory arrests after contracting routine colds and/or ear infections. Her metabolism has difficulty handling the increased stress of fighting infection.

We took Ruth in for a gait analysis the week of Thanksgiving 2003, to set a baseline for her ability to walk and to determine the cause of periodic knee locking on one side. It turns out she has a leg length discrepancy (1 cm) and the bones of her lower left leg are twisted 10 degrees inward. This causes her to turn that foot in and sometimes results in tripping.
How is This?

It was a very technical process, relying on computer-based video capture and modeling but fortunately for Ruth it was relatively easy.
Pretty Technical, eh?

Contact Us

1