Friday, March 11, 2011


As of today our sweet baby Kyler is 1 year post transplant!! YAY!!
Im going to start this update with just a catch-up/ reminder on what all he went through to get here:
-8 Days of chemo (3 of which was ATG which was VERY rough on him)
-11 surgeries to this date. ( He will have 1 more & we hope that is all)
-The Transplant itself (which was a female cord from Europe that was a 6/6 match and same blood type)
-SEVERAL CT scans, Xrays, and ultrasounds
- 3 Double Lumen Hickman line, 1 femoral line,1 port & several IV's and blood draws
- 3 Staph infections (one of which was in his lungs & VERY scary & required oxygen through a nasal canula) & a rare sinus infection.
- Possible GVHD of the skin
- SEVERAL medications
- 2 feeding tubes
- 3 & 1/2 months in the hospital and readmitted once.

Our sweet Little Boy has been through so much, but he has stayed strong and amazing through all of it. We are so proud of him and unbelievably blessed to be his Mommy & Daddy.
Now an update on how he is doing now. At his 1 year appointment all of his labs looked good. They gave him what they HOPE will be his last dose of IVIG. We wont know for sure though for a couple of months. We have to see how his body responds when he isnt getting IVIG and then the next test of his immune system function will be when we start getting him revaccinated. They are hoping to get his port out in the next couple of weeks or so. For the time being we are still to use the same precautions; Not being around sick people or dogs. He can play with chidren BUT only if they have not been sick or had shots lately. We were told to be very cautious for things like chicken pox etc so it is best that he isnt around children who go to school, daycare, etc because we dont know what the children around them have or could have.

On another note; It is so hard to believe that my sweet little boy will be TWO years old next month. It seems like just yesterday we saw him for the first time. He is learning so much! He is the sweetest, funniest, most loving little boy. I cant say enough how much I love him and how blessed I am to be his Mommy! Thank you all so very much for your prayers & please keep praying!


  1. Super congrats on the big 1 year post-transplant. Delightful to see that he is doing so well.

  2. Congratulations on this huge step forward! Glad to hear all the good news, keep them coming.

  3. Great news....hope for no more IVIG and for that port to be removed!
    Congratulations on getting through the year, and here's no more health problems! X

  4. Yay! So glad he's at one year post!

  5. Hi Kyle

    My name is Jenna. You are a brave courageous fighter, You are a special miracle from god, a gift from above, earthly angel, a smilen hero.

    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    Those who of us who have challenges, we smile through our day.
    It doesn't matter what others say
    we are special anyway.
    What is forty feet and sings? the school chior