Wednesday, September 10, 2014

Living

She can walk, and she loves to...

 
Sometimes she wants to hold my hand, but not always.
She doesn't like me running ahead, but it's OK by her if she gets ahead of me. ♥
 
 
Big sisters make her happy
She knows their names, but she can't say it...yet.
She can say:  Mom, Daddy, What, Here, Stop, Hi, Bye, No, Yeah, Sorry, Wow, Doctor, Dog, Eat
 
She can laugh, and she loves to.
 
 
 
She listens to me, usually.
 
 
"Stay there" I instructed, and she never moved. Not even 200 pictures later.  She stared at the environment, watching it contently.  And I watched her. 
 
 
 
 
 
 
I saw strength, beauty, courage, resilience, and I saw that all of my dreams and wishes so far came true.  My fighter is alive and she's living
I want to hug everyone that ever touched her, saved her and helped her. 
 
I know her fight will never be over, and neither will mine.  But it's so nice to just be Mom and not in addition to:  advocate, honorable nurse, crazy researcher... just Mom was overdue and I have been trying to make the most of it!
 
I'm grateful.  Thank you ♥
 
 
I haven't updated much about Cardiology because I just needed to put it all into the Doctor's hands (he's got her back) and maybe I'm afraid if I bother writing details about it I will fall back into old patterns where I am overthinking everything and stressing the F out.  So with that said, this is the best update I have for you...Cecilia was able to stop blood draws, but not X-rays, and we went from appointments being every 3-4 weeks to every 6 weeks.  That was a decent step up while it lasted but we are going back to how it was for at least the last and next appointment because of an X-ray she had recently.  I'm pretty sure that everything is going to improve next check up.  I really was in disbelief that her last 2 X-ray's have shown a trending step back.  Cecilia acts like she is doing great.  That's what matters to me. 
 
 
 
 
Here's a bonus sad looking picture I gave a makeover to:
 
before
 
after