Wednesday, January 4, 2012


Why did we not do this a few days ago??? Kayla's hair not shedding has been SO nice! It was one less annoyance for her today. It went well last night despite the poor lighting in my bedroom. It wasn't as hard as I thought it would be at first. We were all ready for it to be gone. I just bit my lip and did it. I had to go quickly so the blade didn't heat up too much. Her skin is so sensitive and can burn easily. I had to get it as close as possible but not let the blade touch her bare skin. That took concentration which was good. It kept my focus on the task at hand and not on where my mind could have wandered. Then right at the end when I looked up at her in the mirror for the first time, my stomach dropped a little. I looked at Denny and he had the exact same look on his face. Seeing your child like this, showing all the scars, is hard to look at. It's such a reality check. I smiled at him and he smiled at me. Kayla was so happy!

Do you see the darker colored hair on her head? No, I didn't miss a patch or two. It's where her drain was after surgery. See how "trauma" can effect hair color? It's amazing. What is left is a very blonde fuzz. She was very happy to only have short tiny hairs left on her pillow this morning vs. the long annoying never ending strands! With no vacuum here, it makes the hair everywhere more of a pain!

Kayla was very excited to go back to OT again today and finish that snow man painting. Really, she just wanted to put her signature on it... in cursive! (remember this was painted with an awful brush above her head! haha) Mrs. Boerio and Mrs. Weiser... this is for you :) Kayla is so proud to show off her hand writing skills. She misses school SO much!!!

One of my friends, Lea, (Antonia's mom) took an amazing video of Kayla's class set to music that had me in tears this morning. I was bawling like a baby. It was so awesome. If I can figure out how to attach it I will. It's worth sharing for sure!

My AWESOME cousin, Allie knitted this hat for Kayla! It's made from Alpaca... SO soft! Allie's friend Shelli crocheted the flower (thank you shelli). The button in the middle was from Kayla's Great Grandmother, Nannie's collection.  "Nannie" would have LOVED this. Thank you Allie for the priceless family gift. We LOVE it!

Tomorrow we have to be at the hospital at 7am. Those early mornings are tough. Kayla needs her shower... and we all know "that" is tough enough. Good night everyone. Tomorrow there will be some exciting news to add to this blog! Tick tock..........


  1. I think Kayla looks like a really cute artist! Artists express themselves through fashion as well as on paper or canvas. Cute hats of all kinds can be used as a new type of paper or canvas.

    - Take one plain hat like a baseball, knit cap or like artists wear: a beret
    - one glue gun
    - a variety of buttons, beads,
    -scraps of fun fabric can be cut into flower shapes
    - arrange a pattern or design on the hat before you glue
    - start glueing and have fun!

    If the glue gun is too messy you can use fabric markers on white hats or even white sneakers.

    There is the Jackson Pollack method which is super fun: drizzle wet paint over the white hat or sneakers:) You will need to put newspaper down first.

    Annie, would you like me to send you a starter kit since you might not have these items? I would love to if you approve.

    Best wishes,

    Carolyn Meyer

  2. Kayla looks SOOO beautiful and strong! And happy! It must've been a relief for sure! Good job staying strong to you too Annie and Denny! Keep up the good work! ;-)
    Erin S.

  3. Kayla is so beautiful! I love her smile and her beautiful eyes. What a strong little lady and a super strong mom and dad. You are ALL doing a great job. Stay strong and know we're all thinking of you every day. Love to you all! xoxo Meg

  4. Kayla, you look awesome! I love your new do! I'm so glad the hat fits and you like how soft it is. I chose that yarn specially for you because I know you love purple. The purple is the perfect color on you! Glad you like the flower and the button from Nannie's collection. She's watching over you!

    Annie, Evan also has a brain drain spot from his brain surgery, too. It's the same scar. The hair grew back over it in time. I wonder if her hair will be different when it grows back?

    I wanted to tell you about a lovely conversation I had today with my client, Sue, at LeBonheur Children's Hospital in Memphis. (We do marketing for their fundraising programs.) LeBonheur has a partnership with St. Jude's and do a lot of the brain surgeries for the kids at St. Jude's. I mentioned you all were there and she asked if you were lucky enough to be in Target House, so we talked about that and how beautiful it is and a wonderful haven for families at St. Jude's. She also asked for Kayla's name and said that she would pray for Kayla. Such a sweet woman.

    Your story touches a lot of people and we are all rooting for you! Sending hugs! xoxo Allie

  5. What beautiful eyes she has. <3

  6. Kayla looks beautiful! Her pretty eyes stand out even more now!!

  7. You're so beautiful Kayla, and your eyes, your eyelashes, your eyebrows, and your whole self are all just as breathtaking as ever!

    I love you, and am such a Proud Neena because you continue to stay strong, each and every day.....


  8. Can't wait for tomorrow's exciting update! Its been too long....Kayla you are a beautiful, amazing little girl with strength beyond your years and you have the best Mommy & Daddy with you. Stay strong and thanks Annie for keeping us all up to date.

    Leslie, Randy, Keira & Cam

  9. Kayla, you look beautiful! Stay strong sweet girl xoxo

  10. Wow how we see your beautiful face and eyes! Great hairdo! LOVE the special hat Allie knit in soft wool for you, with her friend Shelli's crocheted rose and our Nannie's lovely button. How happy it makes me that you have this hat to warm and comfort you from your PA family. Thank you, Allie and Shelli! xxooAuntieAnn

  11. Great art and signature! That snowman painting is exquisite just like all of you. Kayla looks proud and should be. She is so beautiful, strong and inspiring. Seeing her head scars is important for us. What a brilliant, strong and beautiful young lady. You and your little angel and family give us so much grace. There are no words to describe how much you all mean. Love and God bless, Mary and Frank Hoburg

  12. Kayla, you are PURE SUNSHINE! Stay strong beautiful warrior!

  13. Kayla is more beautiful than ever! Her angelic face is now open for the world to see, batting those stunning eyes and smiling that warm smile. You are so strong Annie for being able to do this and not breaking down! WOW. I love you all so very much. I am so happy to read that Kays is missing school, too and her cursive looks amazing!! She is so great at it already!! Cannot wait to see little mister in these pics too! He's on his way!! Priceless.

  14. Kayla,

    I loved the picture, your perfect signature, and how your eyes convey that everything is going to be ok! You make me smile - always have!
    Love, Mrs. Wieser

  15. Oh my gosh those lashes! Kayla looks beautiful and strong. Our thoughts are with you as always.

  16. There is not a day that i Do Not think of you and ask God to keep the blessing flowing to you and your loving parents.

  17. Kayla, I love your beautiful purple hat!! Without your hair, I can see your beautiful eyes and smile even BETTER :).

    Annie, you are one strong mom. sending you a virtual hug (((((annie))))))).
    And though repeating what was stated above that hardly a day goes by when I don't wonder and lift a prayer for you guys there.


  18. Hello beautiful Kayla, I am sending lots of love and hugs to you and your parents from Germany! You look absolutely gorgeous, and I love your hat! I heard about you from my friend who works at your school, and I asked her to give you a cuddle from me when she sees you next. Meanwhile, I am keeping you all in my prayers xoxoxoxoxo

  19. Kayla looks awesome. Hair or not, she is still as beautiful as ever! That is awesome!! Go Kayla!!

    Love, Krysta

  20. Kayla, I love the new are one beautiful & brave little girl.

  21. Hi Kayla, I'm sending you and your family lots of love, healing and positive thoughts. If I can I will try to help in another way. Your art is beautiful, I love the snowman :) Big hugs and prayers from Chile.

  22. Kayla you really DO look like Belle now! BEAUTIFUL! :)

  23. Keep your head high beautiful, you are doing an amazing job. I wish there was something more i could do because just knowing your story and seeing the effect and ripples your smiles have brought to this school and community has made such a difference in my life on how i chose to look at things.You are so much braver than i imagine i may even be. Im so proud of you sweetie and please always have faith.

  24. Do you have step by step photo of shaveing her head??? Do you have video of it to???