Tuesday, December 28, 2010

Who are these children, and why and they calling me "Mommy"?

Being Home is Bitter Sweet. It's a lot crazier than hospital life, thank God.  Sage and I are adjusting back to normal.  But, by the time we finally get in the swing, it's right back to club med we go.  That's bitter.

The holiday update:  Home For Christmas!
Santa came with a mac truck full of toys and goodies.  Turns out we were all good this year :-D   Saw some snow! Great time with family....I miss my friends SO MUCH. ( I would kill for a carafe of Woodbridge and a full plate of laughter at Beef's today.)  This morning Super-Mom removed the stitches in Sage's back from the biopsy.  Sage was not a fan of that home procedure, and neither was I, but it was ultimately successful and saved us a $90 urgent care visit.  Picc site looks good, biopsy site looks good.  I am treating Sage's wounds where his skin basically peeled up with the dreaded tegadern tape and now are large patches of scab.  The drug rash is 75% better.  It looks great at times and almost back to normal, but then when he gets worked up and running around, it flares up and it doesn't look so good again.  This is to be expected according to the docs, and seems that we are still on track to go back to the hospital on Jan 2nd or 3rd to restart the IV antibiotics for the afb (abcessus) infection.  We will be in for a loooong time, maybe for the rest of his treatment, which may run anywhere from 3-6 weeks.

Hope for the best and plan for the worst.  That's been our CF mantra since the beginning, and good life analogy lately, although I never dreamed I would have to plan for such serious complications.  We have reached a whole new level of CF  crazy with this rash, like a milestone, if you will.  Mommy needs a mental break after this.  Some days it feels like I'm getting hit in the head with milestones...creating battle scars.  Dudes dig chicks with scars?  Not so much.  Thank God I have Louv .  (Don't ever tell him I said that).
I think Louv may actually be smiling?  "And his heart grew 3x's that day...."  <3 U  :-P

 We had a great time taking Christmas photos on our beach, despite the cold. It was a beautiful Christmas day.

Then we started a Christmas campfire to warm the bones after our beach pics.  Roasted marshmallows and coffee warms the soul.
Sage is thoroughly enjoying not having to worry about his PICC line, and reminds me everyday when I say no to an activity that "I don't have a picc line Mom, please let me do ____".  And, he's got a valid point... so I let him.  Mom is not always such a pushover, but I am a softy with a big heart that bleeds at the idea of him having to go through this all over again in just a few short days...Until then, we will as always, be enjoying life to the fullest. Today, we enjoyed pajama day until 4pm.  I highly recommend it.  There was lots of snuggling, waffles and cured meats involved  :-)  Too bad cleaning the house can't be as satisfying as bacon.

My new years wish: 
That everyone can equally enjoy the best,
and the worst of times together. 
Take joy in the small things...
let your heart cherish every little toothed smile
and every single  I love you....
Burn these moments into your heart,
Absorb the love into your soul,
and don't let a single breath get away
without cherishing the life it gives. <3

Love Love Love


  1. Can I have the address for the hospital when you get back. Christopher and John would like to send Sage something to keep him busy.

  2. I'm glad to hear that Christmas was wonderful for you all. It must be wonderful living on the beach even in the winter. The pictures you posted are great! I love the video of Sage. I agree with you that pajama days are awesome. You all have the best outlook on life - enjoy every moment!!!!! Enjoy your freedom over the next few days. Keep us posted. Love, Janice

  3. Wow Danielle, the family photo was beautiful. You must frame that one. Glad you are all having a good holiday. Luv ya. Aunt C.