Thursday, April 19, 2012


Lil Man has been battling ANOTHER Tracheitis.  This is becoming more then frustrating!  He seems to be getting them around every 6 weeks.  Just when he bounces back and gets on a good note ~ BAM ~ another one shows up.  Grrrrr!!!  As of Tuesday, Danny is still on for surgery to have his rods lengthened.   BUT yesterday we had another alarming surprise with Lil Man.....his BM was full of mucus n blood.  **SIGH**  Dr Kasper feels it's Colitis from the antibiotics treating the Tracheitis.  We collected a poo specimen and sent it to lab last night to make sure there isn't anything else brewing in there (aka C Diff) and stopped his antibiotics.  I'm not sure how that is going to fly.....I haven't seen an improvement respiratory wise from Danny yet and now we have to stop the abx.  Oh MY!  He still requires more oxygen time and vent time then normal ~ so we'll see if Tuesday is a go or not for surgery.  Yesterday Danny has a follow up with his neurologist about the new seizure med Onfi that we started about a month ago.  I think it was a good change, but it was a struggle in the beginning :(  Dr E still feels he is having more seizure then he should so we increased the dose ever so slightly and we'll see how that goes.   You can bet this increase is NOT going to improve his respiratory crud as it will bring on MORE secretions.  Oh BOY!!  Have it told you how much I dislike Spring time?!?!  Is it over with yet?!?!
Not only is this season hard around here for Danny, but this Month has proven to be difficult with the loss of friends.  It's bittersweet to connect with this amazing "family" online.  A family that gets you, is walking in the same shoes, one that is an instant connection.  You gain this bond you never thought was possible....especially when most of the time you have never met them in person.  I look forward EVERY day to sit down on my computer and have conversations with these people.  We can talk for hours about our "normal" daily  routines, dr visits, medical crap, and FEELINGS.  I have connected so many WONDERFUL people, I have a "family" I thought never existed.  But with this beautiful world comes the cold harsh reality when these sweet lil babes pass away.  It's a slap in the face that is filled with enormous heartache.  That in it's self is AMAZING when you think about it........a bond n connection that you have with a family and child you haven't even met in person can have such an impact.  I am truly blessed to be friends with The Evan's family and I'm am deeply crushed to say that their sweet Emily has passed away.  She was a fighter and inspiration....Emily will be missed dearly.  
Please wear pink on Sunday to celebrate and honor such an amazing lil girl!!

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