2010: An Elias! Odyssey

By far 2010 was the best year overall for Elias!  Elias spent the  majority of this year at home rather than a hospital for the first year ever! He was actually only hospitalized 4 times this year, two of which were for surgeries. We crossed the threshold of positive days at home versus a hospital for the first time! In 2008 Elias spent more than 200 days in the hospital, 2009 about 170, this year – less than 50! We have also seen a great deal of development from him quickly. On January 19, 2010 he sat up for the very first time! Yesterday, as you can see from the photo, he was walking the halls of the hospital.

While we had a mini scare with his counts, Elias remains stable with his bone marrow. His airway is decidedly, “Less boring” as his ENT and Pulmonologist put it. There is not really any improvement, but the fact that it hasn’t become worse along with Elias’ ability to defy gravity, if you will and thrive when he should be struggling his airway team considers it a victory. We are still struggling with weight gain and growth, typical in FA, but even the endocrine team is scratching their heads and citing he is small even for FA standards. Elias  weighs a whopping 18 lbs soaking wet and is 29 inches tall. The photos are truly deceiving. The big disappointment for the year is a toss up. The colostomy reversal failure or Elias hearing! It is
difficult to say which one has caused us more anguish. We recall in January when the first ABR was done, crying tears of joy in the surgical family waiting room when we were told Elias would have normal level hearing with a bone conduction hearing aid. By April we were fighting to get anyone to acknowledge that he wasn’t responding as he was suppose to. We were told Elias just wasn’t cognitively developed enough. In June a repeated ABR transposed very similar results leading us to a rare and barely understood central hearing loss. After a half year of intensive aural rehab no one is convinced it is working and we are told it could take up to five years. In between we have been trying to create a way for Elias to communicate and comprehend. A very difficult challenge with a very large team of therapist and doctors assisting. Elias is an enigma and proves over and over there is no cookie cutter for him. The world doesn’t like that, the bureaucracy can’t comprehend that, but we are determined and inspired by his desire.
The blessings of this year have been welcomed. We are looking forward to more of those. We are reminded and touched by the angels FA has sent heaven this year. Even when times are rough and feelings are low, our little family finds a way to smile and laugh. That is what we have learned this year. Thank you all for your continued support, thoughts and prayers. We will need them for some of Elias’ challenges already on the horizon for 2011. We hope that every one has a happy and prosperous new year!