• For the better

    For the better

    I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today: A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?

  • Looking the other way

    I was going to post a bunch of pictures today and talk about my wonderful Father’s Day with my family, but that’s getting put on hold for a day. I might get around to it tonight even, but I want to talk about something more pressing on my mind than a good ol’ time. I’m going to talk about something uncomfortable. If you get offended, I’m sorry, but it must be said. I only ask that if you keep on reading, hear me out and give it some thought.

  • Love’s own reason

    Love’s own reason

    Perhaps you’ve heard; perhaps not. The divorce rate for special needs parents, according to word of mouth, is 85%. I’ve also heard 82%. Upon doing some research, though, it’s hard to know where this statistic came from, or exactly how old it is. (With the assumption that the divorce rate goes up each year, that […]

  • Reconsiderations

    Namine continues to amaze us. After a recasting experience that can only be described as traumatic, she recovered quickly and easily. So much so that Jessica and I are forced to reconsider what we previously thought was an easy decision.

  • Trach/vent clinic, then recasting

    I’m sitting here at the hospital waiting for the valet to bring my car back, so I figure I’ll start tonight’s post. I really don’t like making longer posts from my phone, but it’s either this or keep hitting “refresh” in TweetDeck, and since the 24-hour autism event at The Coffee Klatch ended earlier today, my stream has a lot less to read.

  • Namine’s trach/vent clinic visit

    Today is the last day that Namine has to wear arm restraints! Yay! Nothing really much to report from Namine’s trach/vent clinic visit. Last time, they found that she had an infection in her right ear. That’s gone now. We should find out soon if we can get her decannulated this summer. Speaking of, we […]

  • Holy Crap

    It’s been a looooong time since an update. I apologize for that, and I can only hope that we still have some readers! Jessica and I are without an internet connection at the moment. I don’t really know how long I have to post this, either. It all depends on when “linksys” realizes someone is […]

  • Birthday Party!

    Wow! We get to celebrate a very deserving and happy 1st birthday. Long ago over a year ago we were told that she might not make it this far, but she has and she is doing better than anyone can believe. She is the joy of our lives and the happiness that never goes away. […]

  • Finally:)

    Sorry everyone for not posting more often.  It has been quite a hectic past couple of months.  Namine has been home since March and doing great.  We spent two days in the hospital for heart monitoring and they called it equipmentitis.  She has been stating in the low 90’s to even 100% O2 stats at […]

  • Jaw Distraction

    Hello to Everyone, Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of […]

  • Craziness

    Well it has been a crazy weekend and a crazy week ahead. Namine doesn’t have any appointments this week, but starting next Friday I think we have one every day for the next couple of weeks. I will try and take a whole bunch of pictures and put them up for everyone. I shouldn’t say […]

  • YAY for equipment changes.

    Man oh man. If everyone were trained to make changes that would be exciting for us. We had a couple of doctors visits this past week and they made some vent changes. The first changes I could do myself, but the other changes neither Paul or myself could change so we have to wait for […]