Thursday, May 31, 2012

May updates

Sorry for the long absence in updating on Kendall.  She has been doing pretty well.  We finished up her antibiotic for the nasty kidney infection and then waiting around for the cdiff to return.  I was pretty confident it had returned because she continues to vomit up some of her feeds.  I just got results back yesterday and it was negative. cdiff.  Now I have to figure out why she is still throwing up.  It makes it hard to have an active life when I have to have her lay flat on the floor for an hour and a half during her feeds.  If I pick her up too soon after getting them in, I have sticky formula all over my floor.  

Her sleep isn't much better.  We ended up getting her a twin bed for her room to try out.  It worked for one night and then we went back to being up 4-5 times a night with her.  Matt has started sleeping in there most nights and she seems to do better with him in bed with her.  

Here are a few pictures that I wanted to post.  They are a bit random but here ya go.

For those of you who don't quite understand the severity of Kendall's is a picture to illustrate it.  It is also a good look at what is left of her scar.  You can also see the tumors in all of their glory, causing her back to look a little lumpy.

Kendall's hair is getting much longer.  I still have a difficult time figuring out what to do with it.  It seems to be growing on top but she is still bald on the sides.  Here is my first attempt at putting pigtails in her hair.  We've since gotten a little better at doing them.  I just love this pic of her.

Here is Kendall's new favorite thing to do in the backyard.  She loves to sit at the water table and splash around.  She is really rocking her new suit in this pic too.

Here is the icing on the cake.  Kendall is not allowed to go in the pool.  Last summer we went no where near it because she was so sick all summer.  This year I decided that just because she can't be completely in the water, doesn't mean she can't enjoy a little bit of it.  This is Kendall's first time in the pool.  I can dip her down as far as her diaper and that is it.  She loved to splash with her feet.

A few weeks ago, we went down to the NF Walk in Cincinnati.  I was asked to talk a little bit about Kendall.  We had a good time meeting other NF families and at the end we were surprised by an award that Kendall received.  She was given a trophy with her name on it for being the NF Hero of the year.  Here are a few pics of her enjoying her new trophy and medal.

Kendall has scans coming up on June 21st.  These are pretty big scans.  They will determine whether we can just sit and wait or whether we need to go to plan B.  I'm really hoping it is the first because there really is no plan B at this point.  

Please continue to pray for sleep for Kendall.  Also pray for success with physical therapy.  I have given to ok to start challenging her a little more.  This will probably be hard for me to watch so at times I'm going to have to leave the room to help her.  I really do feel like we are at a critical time in her development and she is starting to show me signs of being stronger in her arms.  I need to capitalize on this while we have the chance.  It won't be easy for either of us.  

Braden is done with school as of yesterday.  I'm hoping for time to enjoy the lazy days of summer with plenty of pool time and fun with friends.  Last summer was the opposite with frequent hospital trips and too much stress to even fathom right now.

Also, please remember to sign up to walk or run or consider donating to Kendall's Army for the NF Walk in Indy.  Here is the link.  



  1. I can't pick a favorite picture, but especially enjoy the ones with her trophy - she knows she's a winner! Sending love and lifting prayers for a summer worth celebrating!

  2. Praying for success all around- for better night sleeps, for better feedings, for wonderful knews with her scans, and maybe- a little bit more pool time with Mommy!

    Thinking about you all and hoping Kendall improves more and more each day!

  3. Praying and thank you so much for the photos and update! Her hair is amaizing!!! I love the pig tails!

  4. Well done Kendall on being declared NF Hero of the Year - cool! Love the new photos, so cute :o) She is always in my prayers for healing and happiness. Thinking of you all from the East of England. Have a blessed weekend.

    Nigel xxx

  5. I love the new pictures! She is adorable--especially the one with her pigtails and that disgusted look on her face.
    I'm so glad Kendall is able to enjoy the pool a little this year. What a wonderful way to help her relax and cool off.
    Your family remains in my daily thoughts and prayers. I pray you continue to feel His presence blessing you with peace, comfort, strength, and love. God Bless.

    COLE's Prayer Team