Leo, Our Little Lion Man

      Compass Care was amazing. It was a really long appointment where a doctor trained in general pediatrics who works mostly with complex kids and a nurse talked through Leo's plan of care. They asked about what issues I have at home, where I need the most support, what needs to change kind of thing. They asked about each specialist he sees, how he's being treated, observed, checked on, etc. And at the end of the appointment I had a to do list and they had a to do list.      These people can make appointments for me, reach out to people, answer questions, and more. It feels so good to have doctors familiar with "kids like Leo" available to us. They offer amazing support when it comes to making my schedule, communication, and appointments as easy as they can for me. It was a crazy long, really encouraging appointment.      This past Thursday we went to see our pediatrician. This may seem obvious, but answering the developmental milestones questionnaire is not a fun e

      Yesterday we saw the neuroopthamologist (no clue how to spell that). We were prepared for a 3-4 hr appointment and it was 1.5hrs! Leo did really well and even got a nap (yay nana) in the middle while he waited for his pupils to dilate.     I really appreciated this doctor. He was very kind, helpful, and a good teacher. We didn't learn any new information, but did get more clarity, if that makes sense. It was what we expected which is a kind of comforting thing to experience.     He said the Leo's eyes and optic nerves are normal, no damage. The computer, meaning the brain, is where the issue is. So Leo's eyes are seeing and sending information to his brain, but his brain doesn't know how to process it. This makes sense with what we know of his brain damage at birth.      This being said, the best therapy for Leo is love and engagement with people and his world. There's no therapy to fix something damaged in his eyes. It's another "wait and see" h

      We went to Philly on Tuesday and it was such a good day. My friend, Julie, came with me to help with bags, the pump and g tube, Leo, and all that jazz. This appointment was to see a neurologist who is a movement specialist. She will be the main one dictating Leo's medicine related to movement.     First off, apparently she was already been a part of making decisions regarding Leo. She has talked with his neurologist as well as the rehab doctor who saw him in-patient and originally prescribed the gabapentin. It was so cool that she was so familiar with Leo and his history before even meeting us. She also kind of lead the meeting with these things: 1) I don't want him to be on so much medicine that he's sedated or "not there" 2) I will not pile medicines on. We'll do as few as possible.  3) I will only add one thing at a time so we know what it's doing. Brad and I are so thankful for that approach.     Right now, the only thing she did was up his gabap