Update

This will be short and to the point. We ended up in the ER and admitted last week. Lydon had a horrible ear infection that ended up perforated before we could get it treated despite our very best efforts. He was exhausted before the admission and still is. This started out as "just a cold" but it was draining to him. It wasn't easy for Mommy or Daddy either; we are so tired of seeing him being poked and proded over and over again for something as simple as "a cold". We are discussing our options for possibly getting some more permanent access. This is a huge decision and not one we want to make but we hate seeing the pain and suffering Lydon goes through with every admission. For now,we are home, he is still feeling bad and full of cold symptoms but hopefully he will continue to get better this week without another admission. We have an appointment with Orthopedics tomorrow morning for evaluation of his walking and balance issues. We have follow-up appointments with all of his specialists in February and March. Stay tuned!