Friday, May 6, 2016

Luke Michael's Fight: Knock Out Apraxia!

As with many others living with apraxia, every day marks the beginning of a new challenge, with intensive therapeutic work to be tackled and hard-earned triumphs celebrated at each day's end for for my "Little Prince" Luke Michael. 

Luke Michael experienced a 'normal' full-term birth, albeit with 'moderate' meconium aspiration syndrome, treated with a sense of urgency inpatient, then more routinely at home by his father (I was too nervous) during the first couple weeks. Immediately thereafter, infancy and early toddlerhood entailed assorted medical diagnoses and teams of specialists (for the most part, gifted and loving providers whose relationship and expertise we have come to cherish):  GERD, congenital hypotonia, failure to thrive 😭😰, multiple food protein allergies/anaphylaxis, FPIES/hypovolemic shock, and asthma. 

At 1.5 years old, Luke, following several long agonizing months spent on an exclusive and extremely expensive, not to mention physically grueling, amino acid-based elemental diet (yay Neocate! Boo insurance company mandates on G-tubes, but further yays for our amazing insurance nurse advocates, dedicated dietician and allergist, and especially understanding local support group parents), multiple hospitalizations, surgeries and biopsies, was finally beginning to feel well enough to start acknowledging and engaging with his family and even occasionally the outside world. 

At about 20 months old we were introduced to the term 'developmental delay', followed by a multitude of acronyms:  Early Intervention (EI), CDSA, IFSP; PECS, PROMPT, Kaufman; private, clinic-based therapies quickly (sadly) deemed 'medically necessary' (speech, gross & fine motor, and, most recently dx'd, ocular) ruled our schedule,...that is on the rare occasions when therapies for Luke's older and, incidentally autistic, brother didn't take precedence. Thus began an ongoing and current lifestyle of assorted speech, physical, occupational and vision therapies. Not to mention neurologist, cardiologist, immunologist, dietician, psychologist, psychiatrist visits, hard to establish but much cherished routine in-home therapists, social workers, ABA practitioner interventions/ visitations; and of course carefully (by this point, immensely grateful for the ability, I had quit my career) stay at home Mommy-designed and painstakingly-coordinated metrics, protocols and itinerary, along with an intensely dedicated and amazingly capable in-home support system, led by the best Daddy/husband ever, a truly amazing brother, and a remarkable service dog-in-training, "Fenway".

And so here we are. Luke Michael has just turned 4 and has made immense progress and continues to work hard. Speech goals are more articulation than motor-based, while global apraxia diagnoses and corresponding planned therapies in gross, fine and ocular motor areas emerge as priorities. We are grateful for our knowledge of Luke's areas of need (half the battle) as well as our ability to navigate procurement of public interventions and to supplement private ones accordingly. 

We hope sharing Luke's story will shed some light on apraxia and look forward to transforming experience into a meaningful opportunity for others in the future.