Its been a busy couple of days in Little Os world, and to say - TopicsExpress



          

Its been a busy couple of days in Little Os world, and to say overwhelming may not adequately cover it from mommy & daddys perspective... (not that O minds, as you can tell from the pics!) Owen is hanging in there and things seem to be progressing. He is having a follow up EEG tomorrow to see if there is improvement in his seizure activity. We are still seeing a lot of what we think are spasms so we are holding our breath a little bit as we wait for this test to be done. He (sort of) passed his car seat trials today; generally, it will require 2 of us to take him anywhere since someone will need to sit with him to help make sure he is managing his airway, so that will make daily logistics interesting for a while. And in the meantime, we continue to navigate the maze of disability paperwork, case managers, and all the other steps to continue to plan for his needs at home. Whew. As of right now, we are still hopeful that we may get to go home Friday or Saturday, assuming things go well the next few days. As the theme seems to be, it is all up to Owen... (so cooperate for us buddy!) While we are very excited to get home for a little while, it is also more than a little scary. In some ways, the hospital has been a kind of shelter for us, a safe place where we have been protected in many ways from the day to day. Now, as we are faced with the prospect of having to move ahead and figure out how to incorporate all of this into our everyday lives, we are finding ourselves simultaneously energized and terrified. So many thoughts and questions are swirling around. But, this is part of the journey. Whether we are here in our shelter for two more days or two months, this next scary phase will come and we will have to walk through it. We have to experience it, and thats OK. This will be one of those one foot in front of the other times. As hard as we try to remind ourselves that this is the only way to do it, saying it and convincing yourself of it are two very different things entirely. So, whether we believe it or not, bring on today. #prayingforbabyowen #bringontoday
Posted on: Thu, 04 Dec 2014 05:12:14 +0000

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