Best Friends

This morning I asked Claire who her best friend was, she said Connor and it is oh so true!  Our original plan was I could take Con to clinic to get some much needed alone time, no competition from Claire, or anyone else trying to get time with Con, just me and Con.  Claire ended up coming to clinic though because the fingerprint lady came and took molds out of metal clay (the actual mold becomes the charm, so both Casey and I will get a piece that Con actually touched, and the necklace will ultimately be Claire’s and is a mold of each of their prints, amazing and so special).  Anyways it ended up working out, Claire went on two walks but the rest of the time was just being the best sister and friend to her amazing brother!

   

        

 

  

  

  

 

Yesterday, we had an amazing day just the four of us, capped by Con really enjoying his swingset, over 45 minutes outside, screaming “ready, set, go” each time he went down the slide with daddy.  In talking to the doctors, he seems knock on wood relatively stable and they agree with our assessment that fresh air does his body good and does oh so much for his mood!  He pukes once a day like clockwork not at the “normal brain tumor time”, but in the evening, literally the same time every single day, so that is suspicious.  He is peeing more which could be a function of any number of things with one of the least likely tumor spread to the pituitary.  The parts of his body he can control is down to really just his neck to lift up at this point and his grasp is getting worse (this was doctors assessment as it is hard for us to tell given we are with him every day), but through all this he is still eating, I asked today if they have ever seen a kid eat until the end, the answer was that would be extremely unlikely and would be a warning sign the end is very close.  The nurse practitioner commented he is more verbal, and hopefully knock on wood the Avastin is doing something, I sure hope so!

 

 

  

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3 thoughts on “Best Friends

  1. Have a wonderful Easter making memories ❤️ The pictures of you and the twins are so sweet, pure joy and love

  2. Great update all things considered. Connor is unbelievable and ready to go still!
    These may be some of my favorite pictures you’ve shared. The casual togetherness of C & C is beautiful. It is one of the huge loses I know you’re dreading. So to see them just being near each other yet not playing feels like such closeness.
    And the picture of you hugging them both heads nestled together is perfection. For me that’s what I live for… so it makes me cry happy tears to see you 3 getting these moments together. It seems to somehow capture all that is a mother’s love.
    Fingers crossed for more rain/snow free warm days so you all can get out and enjoy that playset and the fresh air!!

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