Thursday, July 12, 2012

One day at a time.....


This is how Parklen rolled around the floor today.....riding along on his IV pole.



Yesterday when we came to the hospital, and they accessed Parklen's port......he didn't want me to hold him......because, "he's not a baby."  So I didn't.....  I could see him smiling behind his mask.... He did it, he isn't a baby. 

I have dreaded this trip since our last one.  My spirits aren't high.  Three years and eight months of hospital's are getting to me.  Its something that I am used to, but I wish every day that I wasn't.

This month the plan is different than it was last.  Its hard to try and explain to everyone who asks........

They are changing his daily meds to a much stronger drug....one they have tried before but not this high of a dose......hoping that he will respond better to it.  They are considering another round of scopes and tests next month.  And I have been reminded once again, to "think about the transplant."

His main doctor.....has decided after a couple weeks of thinking, that we should go to Maryland.  The specialist there at the research hospital doesn't have any great ideas.....but he wants to see him so that when they discuss him long distance he will have a better idea of what he is like. 
Can I tell you that a million anxieties arise in my gut when I think about making a trip across the country.......a MILLION.    But, as Devan reminds me, we will take it one day at a time.


1 comment:

  1. He looks so tough and so tiny at the same time, Amanda!
    You're an awesome momma, and the grin on parklen's face is proof of that- that pose is so super heroish, chest out (he's not a baby), just missing the cape...so I guess behind every super hero is a...super mom? We believe in you!
    Sarah c

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