Friday, June 15, 2012

Day +2 Final Round

Well, it's been a not-so-fun day of rotating pink buckets about every 30 mins. We have them carefully placed throughout the apartment. One on Kayla's bed. One under the side table next to the couch. One in the bathroom on the edge of the tub.  She makes consistent grunting sounds letting everyone within ear shot know that she is feeling miserable.  It will be like this for about a week. It's pretty much a given. Poor kid! She still finds those few moments after heaving to give us all reassuring smiles to let us know she's still in it to win it. All this fight leaves her exhausted. Especially since it brutally started at 4:30 am. Sadly, we had to skip school because she was just too exhausted and barely was able to go to the mandatory GCSF appointment.

Dad makes a wonderful pillow

Recently, Kayla mentioned that one of the things she really missed about home was her chore chart. I know, REALLY??? Yep. That's Kayla. She is a kid who constantly aims to please and loves to know what is expected of her. She likes rules and boundaries. Such a dream child! So, I remembered that at the last Bingo night we went to, she had won this dry erase board. Perfect! Denny and I thought up a couple of easy goals, starting very simple. You will all laugh when you see how she changed our simple list.  First, this is what we had on there:
-10 mls. of fluids twice daily
- snacks 4 times a day (this could be one cracker, a bite of something, a sip of soup... small goals!)
-Brush teeth 2 times a day

Well, Kayla did not seem happy about this at all. At first I was thinking, really? Is this too hard for her when she is feeling so awful? She just kept whining and whimpering and not really able to verbalize what was wrong with this tiny list. Until she finally admitted that the list was missing something. She said she would be happy if I would please add two more things. So I did... and she was much happier! This kid is too funny.

So, Make the bed and Skype someone were goals she wanted added. These are not set in stone... just goals. You can see how much of these she accomplished today. Kayla is promising to brush her teeth in just a few... so that's good! She ate 1/2 of a mini chocolate chip cookie today. That's it. It was about the size of 1/2 of a grape.

The next few weeks will be filled with lots of appointments. They need to see where Kayla is at compared to where she was before receiving treatment. We will be meeting with OT, PT, Speech, and Psychology. She will have an audiology evaluation, MRI of the brain/spine and another Lumbar Puncture. During this all, we will begin to wean Kayla off of Lipids first, then TPN. This is where we better start seeing some real fight for her to try and eat again. If not, we will be here until she does. Last, her central line will be removed. We are so thrilled and proud that we made it since December with zero line infections or other issues in regards to infection. I am sure it had a lot to do with how extremely diligent Denny and I have been with sterility. I know things can happen even if you do everything right, so we are extra grateful for how lucky we have been.  We are starting to send boxes full of things we have accumulated here back home. We are trying to figure out meals to include all of the things we have stored in our cabinets and not over buy now. It's time to start our approximate month long preparation for our journey home. We have the most incredible town waiting to embrace us in the next phase in our lives. For that, I am grateful for this blog. Grateful I have been able to have a place to share this journey with many people. Wonderful, amazing people who have grown to love Kayla too. Last night, I finally spotted fireflies! I can't wait to drag both the kids and Denny out after dark once Kayla is feeling better so they can see them and witness the magic for their first time! This is something I have been waiting for ever since we learned we would be here through the summer. I grew up with these magical bugs... they are just so cool! It's something you don't see on the West Coast because they need humidity to survive. It's all about finding the beauty no matter where you are.

Tomorrow, our friends in Novato will be gathering at the 5K for Kayla. Some will walk. Some will run. Some will come for the food and FUN events after.  I know all will gather for one reason. To cheer Kayla on and help her to cross over her own finish line. Soon,  she will! I can't thank the incredible team of people who are behind this enough. What a wonderful day it will be. We will be thinking of you all and looking forward to some really fun pictures!


  1. Fireflies bring good feelings. Love hearing of your prep to return home. :-)

    Do you have a blender there? Good for Kayla smoothies and shakes with protein when she's off the TPN. Sending good eating vibes your way!

    Love, Erika & family

  2. Go, Kayla, go! What a force she is!
    Those photos of Kayla and dad is what Father's Day is. Continued prayers, highest thoughts and love, Mary and frank Hoburg

  3. up early doing last minute prep for the face painting tables today. Looking forward to a great day for a GREAT cause!

    We are all so proud of you Kayla!!! You have taught us all a lot about how to be a super-hero!

    Stay strong and come home soon!

    Ann Haupert

  4. Still in my thoughts and prayers! What an Amazing Young Lady! That picture of you and your dad priceless! Much love and strength! <3
    Erin Melrath

  5. She will eat. That girl is so strong, so determined, so smart...she WILL eat. It's her ticket home. There's no place like home. Everyone is so excited for you to come home. So many people that you aren't even aware of. What an exciting thing to read that you are starting to pack for home. Ah. May this be the last time you are in Tennessee for this reason. She's doing it. She's beating this nasty disease. She is a survivor through and through-forever. She gives us all reason to believe in miracles and in God's work. She is a sweetheart but won't be an angel for a long LONG LOOOOONG time from now. She has a lifetime to live before she can earn that title. Annie and Denny you are so amazing, so strong, and such an inspiration for Kayla and so many many others. You have shown that love, laughter and hope makes miracles happen. Happy fathers day.