Wednesday, January 18, 2012

Beckett's First Year

During Beckett's 6 month well check the doctor said that he would need to have an occupational therapy evaluation to check for a condition called hypertonia.  This is a neurological disorder that causes the muscles in the body to lack tone, which results in weak muscles and muscle spasms that cause them to be rigid and stiff. The hypotonia also caused him to have lazy eyes. This then sent us to a opthomologist at Texas Children's Hospital in Houston.  Beckett had to wear a patch on each eye, every other day for 1 year.  He was also being treated for acute acid reflux and taking prescription medication daily. We found out later that all these were symptoms of the hypotonia. We were also referred to a neurocrainal surgeon to treat the a condition called phagiocephaly.  This is plainly called "flat head syndrome".  He had to wear a custom fitted helmet for approximately 11 months.  That was approximatly $4000 that we fought the insurance company on for almost a year.  Of course they never paid.  We were very blessed to find out that the company who fitted him with his helment forgave $3000 of its expense after we paid them $1000 cash. 

Beckett at 5 months old before his helment
On top of the the neurological and the undiagnosed global delays, he was sent to see a neurologist for possible signs of seizures.  He ordered a CT scan and EEG Test.  Good news finally! No seizures or abnormal electrical impluses coming from the brain.  Needless to say, this was just the beginning of all the specialist my son would have to see during the first part of his life.  Our frustration was building to try and find answers to why he was having these problems and looking for someone to tell us.  In the mean time trying to help him the best was we could. That was getting him help through OT at Texas Children's, and eventually through our county ECI program. The emotional toll was starting to show in both my husband and I.  We were trying hard not to think about the financial impact this was going to have on us and our family.