Okay okay...bear with me on this one!  I know it may seem odd to think about, but I guess I am an odd person and this weekend got me thinking about it so here goes.  I have been needing to do a major clean out of all of the kids' rooms for a while.  I have done bits and pieces of it, but I needed to go in with my lawn and leaf bags and really get down to business.  It has been driving me insane for months now and I have been too lazy when I am home to do it.  We needed to put a new bookshelf up in the Adam and Ollie's room, so I decided it was TIME.  I can't say it was a fun way to spend the weekend, but when there is major cleaning to do around here, the kids tend to stay away (hmmm...so does Kevin...) so I had a lot of thinking time on my hands.  The first day I concentrated only on Adam and Ollie's room.  I started the project late in the day, so I didn't get to move on to anyone else.  However, it is the largest of all of the kid room

I read several blogs everyday.  Some of them make me giggle like thepioneerwoman.com; some of them I read because I adore the family and their kids and I want to be on top of prayer requests like missyknight.blogspot.com (and right at this moment, their sweet daugther Lauren could use a lot of prayers!); some of them my amazing husband just started and he is an incredible writer like thebarrelmakerscure.blogspot.com; and some of them I read for inspiration and humor like mymojoy.com.  Mo of mymojoy asked her readers to join her on a project this year.  She got the idea from another blogger and did it last year herself.  This year, she told her readers about it and I thought it was great, so I have joined in (and so has my Mom).  Basically, you pick one word to focus on for the year - A word that you can use to drive your goals and inspire your thoughts.  After some thought, I picked the word Healing.  Because this year I have plans to hel

Cooper is doing great.  We are so happy to see him full of life and enjoying every second of it.  We had a bit of a disaster yesterday afternoon that made my heart stop for a moment and has made it impossible to sleep at night for fear the same thing could happen at night and we could quite literally lose Cooper in his sleep.  After therapy yesterday, I put Cooper in his carseat.  It is a delicate procedure because of all of the lines attached to him and we take great care in putting him in his seat...making sure that his central line is not being pulled at all and his drainage bags are placed just so to keep him as comfortable for the drive as possible.  When I closed the car door, he was in securely and all of his lines were fine.  Sometime on the 20 minute drive home, his TPN tubing became unattached from the y-site that allows him to have so many things connected to a single lumen central line all at once.  The home health y sites do not have e

Oh how wonderful HOME is!  It is definitely one of those things that you don't appreciate enough until you are not there all that often.  With more than 190 days in the hospital in 2009, HOME has become a much more cherished and special place for us!  Cooper is doing very well.  His counts were stable today from the labs we drew this morning.  He is no longer neutropenic and that is GREAT news!  He will still live in the bubble that we keep him in, but we don't have to be too insane about it like we do when his ANC is low.  Cooper bounced back very well from this infection.  I think the difference was the recent blood transfusion.  It gave his body the energy to fight without completely wasting all of his energy stores.  As a result, Cooper is playing and laughing and running around with everyone else at home like nothing ever happened.  THAT is the Cooper that we had all been missing for so long.  We had only enjoyed the e

We are super excited to be getting out of here today!  We are waiting on Coop's 1pm meds to run and then we can disconnect him from his TPN early and head on home!  Our home health company already has his antibiotics mixed and ready to go for us, so I'll call them when we hit the doors and they'll get the supplies to us at home!  Cooper's ANC (immune system) is low, so we are going to be on house arrest for the most part, but house arrest his better than hospital arrest!  We just don't want to risk him getting sick from any other source.  The good news is, his other blood counts are holding stable, so he is on the mend and managed to keep his hemoglobin high enough to fend off another transfusion!  We LOVE that!  And the really good news is that Cooper continues to feel really good!  He isn't running laps yet, but he is certainly energetic and playful and goofy again.  I think once he is home with the rest of the herd of kids, he'll

Okay, so maybe our good news is not the kind of news that most people would consider good, but we are happy to have a name for Cooper's infection.  He has Klebsiella Oxytoca.  Crazy name for a nasty bug.  But now that we know what it is, the treatment can get more targeted which gets us one step closer to home.  So, he is no longer on the vanc or the fluconizole, but is still on the zosyne and gentamiacin.  The other good news from today is that yesterday's culture is still clear so far.  We need a full 48 hours of clear to be sure, but the first 2 days, the cultures grew out within 12 hours, so we are making good progress in the fight against this bug and saving this line!  We like all of that news!  My plan for tomorrow is to talk the doctors into letting us out of here!  I don't know if I will be successful or not, but I am going to try.  They said today that we just needed to id the bug and have a negative culture and then we cou

I am very happy to report that after nearly 48 straight hours in bed, Cooper got up, had a bath, and walked one lap around the floor tonight (still on 11, but we are doing just fine here!).  The unfortunate news of the day came this morning when we found out 2 things from his labs.  One, his subsequent line cultures are still positive, so the infection hasn't been cleared out of his line yet.  And two, he is eating red blood cells like crazy.  He dropped more than a full point from 11.4 on our first admission labs to 10.1 (that is hemoglobin numbers) and he is neutropenic again after finally having better ANC numbers over the past week or so.  That is frustrating.  Hopefully he'll slow down before his counts drop too much more.  We don't want to have to do another transfusion so soon after the last one.  On the other hand, we don't want to go home puney again either.  We are all praying and BELIEVING that Cooper will clear this infection

I am very sad to report that Cooper is growing gram negative rods in his central line cultures.  The GI team has added more antibiotics to fully cover every imagineable bug and he seems to be doing a little better this evening.  He has just been laying in bed all day today.  Well, except for the hour he spent laying on the couch when we moved him to change his sheets.  He is watching movies and sleeping off and on.  It was a very long night here for both of us.  We watched the sun rise at 6:30 this morning.  He was miserable with his temp going as high as 106.1.  For some reason, no one likes to allow Cooper to get motrin, but once we finally convinced the resident that this amazing over the counter drug would actually knock his fever down, she let us give it to him.  She also wrote for morphine boluses because he was in so much pain from the chills and high fever.  I slept with him because he insisted, although I use the term sleep

I will start with the end of the day first...Cooper and I are in room 1108 at TCH tonight.  And now I will back up and start at the beginning.  First thing this morning, Kevin and I took Cooper downtown to his genetics appointment.  We got his EEG report back, but we need to talk to neurology about it so we can understand better what it showed.  He doesn't appear to have epilepsy (like we thought!), but his EEG was abnormal in other ways.  We are hoping it can all just be explained away with Coop's unusual brain MRI and medications he is taking.  Cooper always likes to do this with tests that Kevin and I think are not necessary.  He won't show up as having what someone thought he would have, but instead, he shows up with some other wacky thing.  He looks good to us and he is not having seizures, so we are happy.  We came up with a plan for further testing for Cooper.  The most interesting thing that Dr.

WOW!  This is the first official post of 2010!  It has been a fantastic day here at the Knight house!  Cooper had his transfusion first thing this morning.  He did a great job. It was funny because Cooper didn't want the IV tubing that had the blood going through it to touch him at all.  In fact, he fought off sleep just to make sure that the blood line didn't get near him.  We passed the time watching movies and chatting.  He is such a sweetheart!  We were able to visit with Bryce and see Ms.