Day 47?

The board says day 45, but I think that was from yesterday, but my math says day 47.  I really don’t have a clue anymore, but what I do know is that his WBC shot back up to 11,000 and his ANC is over 10,000.  And all of that was from one little dose of neupogen.  A much smaller dose, in fact, than the one that helped shoot him up to 9,000 a few days ago. 

Today Dr. Weinthal talked like that might be his last dose, but we will have to still see how things go.  He also mentioned that they will be sending some blood off for the test that will determine how much of the cells are being generated from the new marrow compared to the old marrow.  We should get the results back on Friday and this is another hold your breath and prayer moment for us as we want the new marrow to be generating everything if possible.

Dr. Weinthal also expressed a bit of concern that while Cutler is eating a lot of baby food, he still isn’t drinking from the bottle.  He is concerned that most of the nutrients that he needs will come from the formula, but he did talk of using TPN at home, so that leads us to believe that we could be rather close to getting home.  PLUS, this evening I actually got Cutler to drink a bit from the bottle.  It was a tiny bit and he spit out more than he swallowed, but it was a huge step for him to just keep the bottle in his mouth.  In fact, he wanted to keep putting it back on his own.  It’s almost as if he has forgotten how to drink out of a bottle, as he takes his meds and formula just fine from a syringe.  Hopefully some work with the occupational therapist tomorrow will help us get past that quickly.

Otherwise everything is great.  When I got here this evening, Cutler and Nana were hanging out in the kitchen watching the cars drive by.  This appears to be one of his favorite activities, along with watching cartoons now.  He will sit there and just start laughing away.  The video below is from this morning as he sat in Nana’s lap and watched Dinosaur Train. 

Since I am on a rambling pace, I do want to mention how his personality continues to evolve almost daily.  I remember Mason’s evolving over time, but perhaps it is the situation we are faced with Cutler in that I notice something new almost daily.  Like Mason, he really is an extremely happy and friendly baby, but he is also starting to show a very mischievous side.  Tonight while we were rocking he would just grab my moustache and pull as hard as he could and then just smile and start laughing.  I think he gets this from Melanie.  Below is a video from my phone (excuse the layout) after I finally got him to quit ripping away at my face.

Oh, and Cutler also had two more teeth cut today.  Unfortunately one of them was bleeding quite a bit, so he was given some clotting medicine which seemed to help until about 7:30 tonight when he started to bleed again.  He is now getting platelets while he sleeps, since his count was low, and hopefully this should resolve everything by morning.

4 thoughts on “Day 47?

  1. Great news on him eating food. I am sure that he will find his “groove” with the bottle soon!

    We are praying for new marrow to be generating!

    Hugs to you guys!

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  2. Oh, how much I enjoyed the video of Cutler watching the cartoons on Nana’s lap. Then, when I read about how he has become mischievous and enjoys pulling daddy’s moustache, I really smiled. He is such a special child.
    We will be holding our breath and praying, too, while we await the news about this next blood test. Go, Cutler!
    Love,
    Aunt Linda & John

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  3. Enjoyed the video of Nana and Cutler watching TV. What a happy, happy child.

    Fear not, for I am with you;
    Be not dismayed, for I am your God.
    I will strengthen you,
    Yes, I will help you,
    I will uphold you with My righteous right hand. Isaiah 41:10

    Praying all blood test are perfect and new marrow is generating.

    Ya’ll take care of each other.

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  4. You have no idea how happy the videos and pictures make me!!!! Especially after a “trying day” at work! There are no babies that are as wonderful as Cutler! He definitely spoiled me! We still talk about Cutler and pray for him on a daily basis! He might not be at school every day, but he is never far from our minds and hearts!

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