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Monday, June 28, 2010

Avery's Song

Thanks to Rob for helping me post the song on the website. Nana had the song made by a group of musicians that do so for sick kids. It was quite the catchy tune I think and Avery loves it! We sing it to her all the time and we even have it as a ring tone when Nana calls!

Avery started her 4th week today....still doing well and no noticeable side affects. we hope to continue down that road as it is much easier than the one we were on for Chemo. I spoke today with the Johnson County Infant Services coordinator and we'll be setting up times to do evaluations when we get back to KC. This group will help us continue her development once we are back in Kansas. The walker is of course...still not here. The one that was ordered was on back order and they found that out last Tuesday....which means the walker won't show up till we leave FL -- that's my luck anyway so its no surprise.

Avery moves up in the time slots for radiation treatments starting on Thursday. Her friend Megan is done tomorrow and the other little girl ahead of Avery has to be hydrated prior to being sedated so she can't go first....that means we have to be there at 7:15 am moving forward....THANK GOD Jeremy is taking over next week! We all know how hard this would have been for me....The good news is that she will probably be done with radiation by 10:00 each morning and have the day with Daddy! Yay for Daddy!

Jeremy, Brian and Jeremy have been working so hard this last week on finishing up the floors. From the pictures he sent on the phone, it looks amazing. The carpet they tore up was absolutely disgusting and it is so good that we decided to do it. Avery's counts will be susceptible to dropping again and the last thing we need is for her to catch something from the bacteria in the carpet. We appreciate all the help Brian and Jeremy have given to help us get this completed prior to her coming home. What a huge relief!

Nana comes tomorrow and we are so excited. She is not going to be very happy when she trades in the Frozen Tundra for the Hot & Humid....but we can't wait! Aunt Lindsay was a great time this weekend as well...belly bump and all, the 4 of us (baby rau) had so much fun! Aunt Lindsay even helped us craft for a while!

I called St Jude to check on our schedule for the week we are there in July and it looks like we have our appts lined up for Wed-Fri. The only one missing is the eye dr appt so we are looking into options that don't include us spending the weekend in Memphis....we'll see what we can do about that.

Well, its about time for her to eat and I better find something good!



  1. Dearest Avery and Family,

    I heard about your story through a friend of yours. I am so touched by your strength. We have a 21 month old that was dx w/kidney cancer in November. The tears flowed as I read your blogs, and knew how you were feeling. My husband and I have already started praying for your sweet Avery. She is beautiful!! It amazes me the strength and power little ones have. Love, thoughts, and prayers being sent your way.

    Chris and Charity Hollan
    Springfield, MO.

  2. Hi Avery and Jenn,
    It's Miss Suzanne, your PT from Wolfson's. I am home recovering from my surgery and miss you sooo much. Sounds like you are doing well. Sorry that the walker is talking so long.
    Avery, you are jsut so adorabel and sweet. I think of you every day and you are in my praryers. I hope that i get a chance to see you before go back home. God Bless:)

  3. Dear Avery, Jenn, ane Nana (and Jeremy),

    I am also so so glad we met you all!
    If Avery was any more adorable - it would be ridiculous.

    I am very happy to meet another wonderful, crazy mommy and Nana pair like us! Ha!

    I am guessing as your luck would have it, that the walker is not here today?!

    Sorry we missed you this morning - I forgot when we spoke at rehab yesterday that Matthew was coming in late today becuase the little chunker lost so much weight - they have to refit him for a new mask! HA!

    Therefore, he had to go last today in order to be rolled over to CT Simulation.

    The pics here in the blogspot are awesome (and the song is so cute... and funny too)!

    This journey is a tough one, but it is meeting families like yours that help us make the best of it.

    I suppose we won't see you until next Monday, Jenn.

    Good luck and hugs to you!


    Matthew, Tina, and Nana