Wednesday, January 18, 2012

Beckett's First Year

During Beckett's 6-month well-check the doctor said that he would need an therapy evaluation to check for a condition called ‘hypertonia.’  This neurological disorder causes the muscles in the body to lose tone, which results in weak muscles and spasms that cause them to get rigid and stiff.  Hypotonia, we believed, also caused him to have lazy eyes, or strabismus. This then sent us to an ophthalmologist at Texas Children's Hospital in Houston.  To lessen the effects of the affliction, Beckett wore a patch on each eye, every other day for one year.  He also was treated for acute acid reflux, and taking prescription medication daily. We found out later that all these were symptoms were the result of the hypotonia.  Further, we were referred to a neurocrainal surgeon to treat a condition called phagiocephaly, also known as "flat head syndrome."  Custom-fitted for a helmet he had to wear this for almost 11 months. 

Simultaneously, insurance claims were being challenged.   For treatments, tests, and specialists so far, we were receiving bills upwards of $4000.  To no one’s surprise, the insurance company denied the claims.   Back-and-forth we went for almost a year.   We were however fortunate to learn that the company that fitted him with a helmet waived $3000 of its expense after we paid them $1000 cash.  But still, bills were adding up. 

Beckett at 5 months old before his helment
On top of the neurological and the undiagnosed global delays, Beckett was sent to see a neurologist for possible signs of seizures.  At 14 months I noticed sudden jerks and rolling of his eyes.  A CT scan and EEG test returned results of o seizures or abnormal electrical impulses coming from the brain.  A ray of good news, finally!
Needless to say, these tests and screenings were just the beginning of the many specialists my boy would come to know during his first months by my side.  Meantime, our frustration was building as we tried to find answers for his conditions.   We wanted desperately for someone to tell us definitely what was strong.   In the continuous search for finding the best possible care, we focused on getting him help through Occupational Therapy at Texas Children's Hospital, and eventually through our Harris county ECI (Early Childhood Intervention) program. The emotional and physical strains were taking their toll on my husband and me.  We were trying hard not to think about the financial impact this was going to have on our family, but expenses were never far from the back of our minds.

In Beckett’s first year we became familiar with hypertonia, strabismus, phagiocephaly, CT scans, and the ever-lingering fear of not knowing how to save our beautiful boy from medical conditions best left unfamiliar.