Tuesday, December 21, 2010

5C15, day 2...Rash day 5.

Louv's Birthday came and went.  Fantasy football playoffs were won.  We were transferred out of New Hanover Childrens in Wilmington, back to UNC Chapel Hill.  And still, no answers.  Sage's condition is worstening by the day, but his spirits are still good.

Sage met 3 of the best specialist doctors in the country today.  Like any happy family, all of them disagreed with each other about what this rash is and what caused or is causing it.
Leading dermatology expert said it's D.r.e.s.s. (you can google Dress syndrome) which has A 10% MORTALITY rate.  Not good when the things he has are measured by chances of death.  That's beyond disheartening.
The leading allergist says it's severe IgG reaction, also life threatning.
His CF doctor is just about in tears,(I could tell)  and she is tough.
(ugh oh).
All of the possibilities are very serious and could have lasting organ damage.

I feel dizzy and I have a headache.

So, Sage and his rash are watching TV, and Mom is gonna lay down for a while and avoid all doctors and totally avoid all medical journals. I will go in the tiny room bathroom and have my meltdown after he goes to sleep.
I just can't do this right now.

In my own personal hell watching my son try to win a totally unfair fight....again,  and go through torturous amounts of pain.....
skin biopsies (he now has stitches in his back) :o(
.....I will put on the happy face, post some photos from today, and snuggle with Sage, crying my eyes out in my heart, but telling him it will all be ok.  I hope.

Still smiling!  You have no idea what he has been through today. My Hero.

Our Room....Christmas Cheer?

Mom's origami snowflakes

Mommy n Me

Skin biopsy and stitches.  That was awful. 

No answers,
No improvement,
No more medicines to treat his infection.
So hope is all we've got.
I'll take it.
Got Prayers?

xoxo  Mommy


  1. Danielle, you are a FANTASTIC mother!!!!! I am so proud of your srength and courage and I'm sure that comes through to Sage.

  2. 6 years ago I was blessed with the most amazing nephew in the world. He has such a positive outlook on whatever he faces, he has a smile that can overcome anyone. He also has more courage than anyone I have ever met. He is truly a gift from God. I am so honored to be his nannie....its just so hard to be so far away. We love you so much Sage!

    Danielle I know its not easy being there alone with all thats going on, but know that we are all praying for all of you. We have faith that God will take care of our little man.

    Also.....Way to go Ellie!!! We are proud of you! and to my big brother....Your getting old! LOL

    XOXOXOX ...Nannie, Mallory & Nick

  3. Danielle....we are praying for God to give you much needed strength and to lay his healing hands on Sage. You are one amazing Mom to drop the world for Sage or pick it up if you had to for him. In His Name, Angela & James

  4. You are not alone. LOTS of people are praying for you guys!!

  5. Our prayers are with you also! You both are awesome parents and Sage is such awesome kid! Love, Janice Richard

  6. Danielle...I am so sorry that your family and sage has to go thru all of this. I am here in Florida praying for you. You are an amazing woman/mom....i don't know that I would have the strength to do what you do. Love and miss you!!
    Stay strong
    Melissa Tassinari

  7. You are one TOUGH mom hell I think all of us CF parents are tough but you and others are way stronger than I am. I hate that you all are going through this, I HATE there are no answers and I HATE that none of the doctors can agree on what it could be, saying and sending many prayers.. Is there a address for cards?


  8. ???? My comment from yesterday is not here! I just said that I so wish I was closer to you, I wish I could help in anyway, even just a hug! I am thinking of you guys and praying the doctors find something that works for our Sage! Love you lots!