Wow, I just can't believe that it is almost the end of June. It has been two weeks since my last update, and while it seems like we have stayed busy, there actually haven't been too many appointments. Ethan had occupational therapy (OT) on Thursday, July 16th. The OT is working to help Ethan improve his fine motor skills. We have noticed that his reach is much more accurate when he wears his glasses, but he just doesn't like them. He loves to rip them off of his face, taking his hearing aids with them. So, we try everyday but we haven't had a lot of success when it comes to keeping them on. Last week was Vacation Bible School (VBS) at our church. We only made it to VBS on Monday. Ethan and I went to the opening worship rally and I think he liked the music :) and then we hung out in the nursery. Tuesday, we went to our playgroup at Baby TALK. Wednesday, Ethan had physical therapy (PT). The PT is working with Ethan to improve and advance his gross motor skills...
Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.