Day 85 – Grayson’s Condition

Today was joyFULL and sobering.

As Brant mentioned previously, the first two weeks at this facility were filled with testing and evaluation. Baselines were established in a wide variety of physical, occupational, speech and social skills. In addition, health status and medication status were reviewed. We met for several hours with representatives of each major area and received written and oral progress reports. It is quite a thorough process and most informative.

The dramatic improvement Grayson has made over the last 12 weeks is exciting, encouraging, and a cause for grateful celebration. Nothing can ever diminish that. Physically he is getting stronger and more competent and short-term goals are to gain back lost strength resulting from his lengthy hospitalization. Gross and fine motor coordination is significantly decreased and is a source of frustration.

Grayson is gaining more competencies in daily living tasks but clearly still has significant safety risks. Obvious recent improvements in speech and verbal abilities come and go due to a variety of factors and we are still confident improvements will continue steadily in this area.

The less visible deficits are more sobering and it is more difficult to predict outcomes. There are numerous impairments that significantly affect his ability to respond to certain stimuli, identify hazards, or respond appropriately. The counselor likened an anoxic brain injury to Swiss cheese where there can be holes scattered throughout. Information retention, processing and retrieval can be tricky if a "hole" exists where it didn't before. Sometimes a new path around the "hole" can be forged – sometimes not. His short term memory is still significantly impaired which obviously interferes with learning (or relearning).

Grayson has a rich imagination and love of fantasy worlds, languages, and creatures. That rich fantasy world now co-mingles with reality. The result is sometimes a bizarre description of his understanding of what is going on or why he won't or can't do something.

Without getting too deeply into the clinical description of his impairments and his competencies, it is encouraging to hear that "it is a good thing he is a nice person to begin with". His core personality helps him as he works to regain control over his body and mind. We were reminded of what we already knew, that this is going to be a long journey with an unidentified destination.

This evening we joined him in the middle of his Monday music therapy. This weekly session is voluntary, held in the recreation room of the residence. No one else attended tonight, so it was a Reed family session. The gentleman who led the session is wonderful, armed with patience, musical skill, sensitivity and a boatload of musical instruments for patients (and family) to provide rhythm to his flute and stringed instruments. Grayson happily sang along to a wide variety of songs (while reading the words), tapping his foot and trying out various rhythm instruments. What a multi-faceted therapy session it was! It involved his whole body including eyes, ears, voice, feet, brain, lungs, heart – and his lucky parents. After a whole day of hearing him speak rarely above a whisper – it was joyFULL to hear him singing out AND singing on pitch as well as rolling his eyes and giving his dad "the look" when he made corny jokes or referred to Reed family silly songs.

I thank God today for caring, patient, methodical, and educated caregivers and for music that reaches into the deepest recesses of our being and gives us joy.

Grace and peace,

Regina