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