The project is being implemented with the support of UNICEF Ukraine and with financial support from the Government of Norway.
Implemented by: Partner:
U.D.G.E.E. Santa Marinella
Postural Transitions
Standing and Balance
• Independent postural transitions between different decubitus positions and verticalization on both sides
• Sit-to-stand without support
• Autonomous standing with AFO
• Balance reactions to self- and externally induced perturbations (with and without support)
• Lower limb muscle strengthening
Walking (With
Assistive Devices/Orthoses)
• Walking with AFO and pelvic-held gait trainer
• Gait cycle re-education
• Postural control during walking
• Functional walking for purposeful movement
Vision
• Reduction of right eye strabismus (occlusion therapy)
• Improved right eye convergence
• Increased visual attention and exploration of the left visual field
• Controlled reaching in all positions with the left upper limb
• Opening and closing of the left hand
• Fine motor skills in the right hand
• Bimanual integration (left as support function) Manipulation
Attentional and Executive Functions
• Tactile perception and integration during object exploration
• Expansion of praxis and play sequences
• Visual analysis and visuo-spatial processing of 2D and 3D stimuli
• Visuo-motor integration with 2D and 3D stimuli
• Use of visual guidance for motor planning and programming (imitation/modeling)
• Improved motor problem-solving skills
• Enhanced selective and sustained attention for motor feedback and monitoring
• Defensive reactions
• Emotional regulation Perception Disturbances
• Tolerance for anterior void perception
• Shared attention
• Recovery of socio-conversational and pragmatic skills through role play, reasoning, and non-verbal communication Communication and Language
Activities of Daily Living ADLs
• Postural transitions in daily life settings (bedroom)
• Participation in dressing tasks (inserting arms)
• Participation in feeding activities (using a fork and glass)
• Participation in basic personal hygiene (washing hands and face, combing hair)
• Communication for basic needs (bathroom, thirst, hunger)
• Engagement in play and adherence to turn-taking and rules
Family Preparation for Discharge
• Demonstration of exercises for skill transfer
• Education on risks of independent movement with assistive devices
• Referral for community-based care
• Perceptual containment
• Pelvic stability Grip on Iliac Crests
Manual Stimulation of the Leg
• Correction of compensatory movements
• Correction of step length
• Correction of step timing
• Work on balance responses Absence of Anterior Support
• Work on visuo-perceptual integration
Variable Manual Support
• Work on parachute reactions and assisted balance
• Work on balance responses
Thoracic Ring
Pelvic Ring
Sub-pelvic support
Front-to-back Wheel Lock and Speed Limitation
Lateral Elastic on Foot or
Therapist’s Physical Guidance
Use of Walker Outside the Therapy Room
• Perceptual containment
• Trunk support
• Control of pelvic dynamics
• Compensation for lower limb strength deficits in motion
• Poor step timing
• Gross motor coordination deficits
• Correction of adduction + external rotation of the left leg
• Increase endurance
Standing position
Not on the bed (too heavy)
Support joints
Allow muscle strengthening
Prevent hyperextension
Walking
Correct foot positioning
May be heavy and restrict dorsiflexion
When the patient is ready:
Posterior bar or lower supports
Buccal synkinesis during gait
Irradiation to the left upper limb
Postural compensations
Frustration and opposition
Fear
Sustained attention deficit
SUPPORT
• In the gym
• In environments with minimal distracting stimuli
• On flat surfaces
• Visual facilitations
• With the therapist
• Outside the gym
• For more chaotic environments
• On unstable terrains
• With parents
SETTING
• Seated on an Xpanda system
• Concave table
• Color markers for hemispatial reference
• Black/white panels or boards
• Objects suited to the goal
• Compression tape on hand and wrist
HAND OPENING DURING REACHING
• Shoulder → limb in support or suspension
• Elbow → variable distances from the body axis
• Wrist → object orientation variation
BIMANUAL INTEGRATION WITH SUPPORT FUNCTION
• Adducted shoulder
• Flexed elbow
• Intermediate forearm supination
• Object fixation through hand-table contrast
• AFO braces with posterior bar
• XPanda postural system
• Sting Ray postural stroller
• Walker
• Presence of ventriculo-peritoneal shunt
• Tracheostomy
WPPSI- IV
QIV: 127
Information (IN) pp 14
Similarities(SO) pp 14
Vacoboulary(VC)pp 9
Maintaining muscle length and ROM
Postural-motor
• Manual Therapy
• Stretching
• Taping
• Assisted gait with harness and pelvic support
• Balance in standing position
• Reduction of perceptual distortions and fear
• Variability of postural-motor responses
• Visual and tactile feedback for posture
• Unimanual reaching and grasping exercises
Left upper limb
• Support exercises (postural transitions and postures)
• Bimanual exercises
Attentionalexecutive functions
Other
• Attention exercises
• Motor-practical and social problem-solving
• Regulation of avoidance and escape behaviors
• Facial training
• Visual training
• Speech therapy
09/08/2024
Follow-up after 5 months Completed NGF cycle
ENT ASSESSMENT for tracheostomy removal
3 LGT and 2 PT sessions per week Kindergarten enrollment
ASSESSMENT update and rehabilitation program Reassessment of aids/orthoses
Musculoskeletal System
• Residual hypertonia on the left side (more in the upper limb)
• Closed hand and slightly flexed elbow
• Maintained ROM
• Improved facial deficit with more symmetrical buccal rim and eyelid
Medical Research Council (MRC) scale for muscle strength:
- Right side: 5 (Normal strength)
- Left lower limb: 3 (Movement possible against gravity)
- Left upper limb: 2 (Active movement with gravity eliminated)
Gross Motor Abilities
• Full head and trunk control
• Independent postural transitions on horizontal and intermediate planes, supervised sit-to-stand
• Independent standing balance
• Unstable independent gait with supervision: unharmonious gait cycle, instability in directional changes
• Attempts at ambulation without braces
Gross Motor Function Measure-88 (GMFM-88): 41.2%
Gross Motor Function Classification System (GMFCS): Level III
Vision assessment in a well-lit environment
• Anisocoria OS>OD
• Photophobia
• Exotropia OD (-20 exotropia at near)
• Fixates with OS (>3 meters)
• Continuous and smooth vertical and horizontal tracking, circular tracking with slight compensatory head movements
• Evocable horizontal and vertical saccades
• Ocular motility: hypofunction of Medial Rectus OD, hyperfunction of Lateral Rectus and Inferior
Oblique OD
• Insufficient convergence
• Visual acuity (Lea Symbols): OD 3/10, OS: 9/10
• Hypertonia in left upper limb
• Left upper limb: flexed elbow, neutral and mobile wrist, hand in a loose fist
• Left-hand activation upon request
• Parabolic reaching with compensatory shoulder elevation
• Weak left-hand grip for a few seconds if the object is passively placed in the hand
• Difficulty in releasing objects
• Normal visuo-motor integration
• Normal praxis-constructive abilities
Manual Ability Classification System (MACS): Level III
Phono-Lexical Test (TFL):
Lexical comprehension: 25th percentile
Lexical production: 75th-90th percentile
Rustioni (PVLC):
Morphosyntactic comprehension: average performance
Bus Story:
Narrative skills: -2,6 DS.
• Increased communicative initiative
• Turn-taking and waiting times respected
• SVO sentences enriched with coordinate structures
• Speech not always contextually appropriate
• Verbal and behavioral stereotypies
• Pragmatic difficulties
• Narrative difficulties
• Good contextual and non-contextual comprehension
Executive Functions
• Age-appropriate verbal and motor inhibition
• Age-appropriate selective visual attention
• Impaired sustained visual attention
• Age-appropriate working memory
Autonomic reflex functions
• Spontaneous breathing
• Phonatory valve in use 24/7
• ASSESSMENT for tracheostomy removal
• Regular feeding
• Removes socks and attempts to take off shirt
• Takes food from the plate using a fork and drinks from a cup
• Washes hands and brushes teeth but requires assistance for thorough cleaning
• Completely dependent on parents for complex personal hygiene tasks
• Taping Maintaining muscle length and ROM:
• Manual Therapy
• Stretching
Improving posture and gait:
Improving balance in directional changes:
• Visual feedback
• Tactile correction by the therapist
• Muscle strengthening
• Gait initially performed with manual support, then independently
• Training for sudden directional changes
• Stop-and-go exercises
• Obstacle courses
Orthoses modifications:
Vision
• Barefoot gait
• Trial of posterior bar orthoses
• Trial of T3 orthoses
•Occlusion therapy for the right eye (OD)
•Use of simple, non-frustrating activities (gross-motor) or large objects
•Exploration and attention to the left hemispace
Disperception:
Left-hand integration:
Attentional and executive functions:
Communication and language:
• Static positioning in the center of the room
• Parachute reflex exercises
• Balance exercises with visual feedback
• Weight perception training
• Communication
• Unimanual exercises
• Object holding
• Object transport
• Bimanual integration (supporting role) with smaller objects
• Sustained attention
• Inhibition and rule compliance
• Emotional and behavioral regulation
• Socio-conversational and socio-pragmatic aspects
• Reduction of perseverations through contextualized responses
• Narrative skills training using a "memory book"
Gait cycle:
Base of support and arm posture:
• Fast walking
• Irregular step pattern between right and left
• No consistent timing
• Wide base of support
• Medium guard position
• Absence of pendular arm movements
• Left iliac posterior tilt
Left Lower Limb:
• Left leg externally rotated, adducted, and circumducting
• Left knee hyperextension
• Hyperlordosis
• Retroposition Trunk
Upper Limbs
• Right shoulder anteriorly displaced
• Left shoulder posteriorly displaced
• Left upper limb flexed at the elbow with a closed fist (irradiation)
• Slowing down the gait
• Mechanical postural correction Iliac grip support
• Reduction of base of support Manual stimulation of the leg
• Reduction of adduction
• Facilitation of external rotation
• Stimulation of pendular arm movements
• Lowering of the upper limb guard position Manual stimulation of upper limbs
• Facilitation of gait timing
Verbal cueing
• Attention cueing
• Cueing to close the mouth (oral synkinesis)
• Postural correction
• Motivation Visual feedback
• Facilitation of symmetry and direction
Reduction of hyperlordosis and anterior pelvic tilt
Slowed and symmetrical gait between both legs
Decreased base of support
Lowering of arm guard position and improved pendular movements Increased endurance
GAIT TRAINING WITH SINGLE-HAND SUPPORT
During static standing
During gait
Static + dynamic balance
• Oscillating platform (frontal and lateral)
• Proprioceptive cushions
• Single-leg stance with support
• Walking paths with unstable surfaces
• Mats
• Garden terrain
• Directional changes
Improved standing balance in response to weight shifts
Reduced base of support and arm guard position during gait
Improved balance during directional changes
Reduced fear of falling
• Step training
• Step + proprioceptive cushion
• Stop-and-go with single-leg stance pauses
GAIT WITHOUT SUPPORT
• Increased anterior pelvic tilt
• Left shoulder positioned more caudally Posture
• Mild external rotation of the left leg
• More regular and faster step pattern
• Slightly widened base of support Lower Limbs
• Full dorsiflexion on the right
• Bilateral pronation Foot Contact
• Reduced dorsiflexion on the left
• Pendular movement on the right with slight emergence on the left
• Reduced irradiation on the left
• Greater release of the right limb Upper Limbs
Other
• Possible barefoot gait
• Reduction of oral synkinesis
Fully autonomus gait
Able to climb stairs without alternating ,feet using a handrail
Emerging running ability
Prescription of a T3 orthosis for the right foot and a posterior-bar for the left
Possible object transportation
Increased buccal synkinesis and irradiation during upper limb use on the left
leg-Single bearing-weight
Stair climbing with upper limb support
Escape attempts and refusal behaviors
Supervision required for occasional loss of balance
Knee hyperextension during barefoot gait
• Facilitating compressive taping
• Mobilization and stretching Manual therapy
Unimanual activities
Bimanual activities
• Grasping, transporting, and releasing objects
• Object transport during gait
• Arm suspension in sitting position
Reduced muscle tone and improved hand opening
Sensory training
• Object holding
• Object transport
Emergence of raking grasp for object transport
Grasping with brief target holding
Occasional spontaneous use of the left hand
• Handling objects with different textures
• Identifying objects of various shapes with eyes closed
• Load-bearing exercises (parachute reflex and postural transitions)
• Mirror-based visual feedback
Increased push and support during postural transitions
Elimination of compensatory movements in suspended positions
Persistent hypertonia and strength deficits
No use of the 4th and 5th fingers
Low motor initiative in most situations
Tendency to refuse left-hand use
High fatigability
MELBOURNE ASSESSMENT 2:
- Range of motion: 22%
- Precision: 28%
- Dexterity: 6%
- Fluency: 29%
Developmental quotient: 87 (low-average for age, 19th percentile)
Maintaining muscle length and ROM
Postural-motor
• Manual Therapy
• Stretching
• Taping
• Gait with orthoses
• Barefoot gait
• Postural response variability during walking
• Single-leg weight-bearing balance
• Dynamic activities
• Support exercises
• Grasping exercises
• Bimanual integration exercises Left upper limb
Attentionalexecutive functions
• Attention tasks
• Problem-solving activities
• Emotional and behavioral regulation
Other
• Facial training
• Visual training
• Speech therapy
4 & 5/02/2025
Follow-up after 5 months Not schooled
Tracheocutaneous fistula 5 LGT and 5 NPM sessions per week
Evaluative update and rehabilitation program ReASSESSMENT of assistive devices/orthoses
• Postural alignment: Right-convex thoraco-lumbar scoliosis (10° Cobb); left scapular girdle lower than the right; iliac crest misalignment, with the right side lower than the contra-lateral side
• Gait with orthoses (AFO on the left, T3 on the right): Presence of lateral trunk tilt; asymmetric weightbearing during gait (greater on the right); bilateral lower limb external rotation; mid-range arm positioning; absence of pendular upper limb movements; regular base of support
• Gait without orthoses: Increased base of support; instability; left knee hyperextension
• Emerging running ability with caregiver hand support.
• Shoulder flexion associated with elbow flexion
• Hand opening possible through passive wrist flexion
• Raking grasp with passive loading (resistance)
• No adaptive hand movements
• Absence of object transport and release
• Left shoulder retraction with leftward rotation of the trunk axis
• Left-side irradiation with shoulder adduction, elbow flexion, and hand clenched in a fist
• Difficult bimanual integration
Use under request Spontaneous use
↑ Intentional communication
↑ Initiative in communication
↑ Verbal communication
↑ Formal language appropriate for age
↑ Contextually appropriate speech
↑ No perseverations
↓ Mimic and gestural communication
↓ Pragmatic aspects of communication
↓ Socio-conversational skills
↓ Logical-narrative skills
↓ Oral praxis
↓ Verbal fluency
19/09/2024
• Postural correction both with and without orthoses
• Manual therapy for musculoskeletal dysfunctions (girdles, spine, feet)
• Proprioceptive exercises and weight distribution training Gait training
• Reinforcement of pendular upper limb movements
Left upper Limb
• Use of a specialized chair and table with an inset design for postural symmetry
• During spontaneous right-hand activities: use of an elastic wrist-hand orthosis to limit irradiation to the left hand
• During grasping tasks with the left hand: training on conscious use of synkinesis to improve grip strength, object transport, and release
• Integration of grasping with reaching in all spatial positions (for both stationary and fixed objects)
• Attention tasks
• Problem-solving exercises
• Emotional and behavioral regulation Cognitive and behavioral training
• Facial training
Other
• Visual training
• Speech therapy
• Re-assessment for tracheostomy closure surgery
• Prescription of an elastic wrist-hand orthosis (SALLI type)
• Renewal of posterior-bar AFO for the left foot and T3 orthosis for the right
• Starting school (with educational support and AEC assistance) Meeting with school teachers to define an individualized educational program, teaching strategies, and compensatory tools
• Continuation of territorial speech therapy and neuropsychomotor rehabilitation
Meeting with territorial therapists for discussion and goal sharing in the rehabilitation program
• Integration into a small peer group to support communicative, relational, and socioconversational skills
• Planned inpatient admission in the Neurorehabilitation Unit for follow-up in six months
