Monday, April 20, 2015

Cast 11

I've been avoiding updating the blog.  I'm not sure why and maybe I am.  As much as I would love to be a light of hope for someone on the EOS journey, our road is not as I had imagined it would be.  It's really rough with no end in sight.  And that overwhelms me and I don't have a lot of good things to say.  And I can't say anything bad either.  So I guess as it stands, maybe I don't really have anything insightful to say.  So here is an update after ten casts and getting Cast #11. 

We took the cast off at home on Sunday, March 29.  The next day we headed into the city so she could have an echocardiogram.  With suspected mitochondrial disease we have to check a lot of things. 

The next morning we headed out for a family vacation to see Ben's family and some friends just outside of Denver.  (I would love to write a post on the we'll see).
 Allyn was such a doll on the trip.  Seeing Lala and Mimi and Poppy made her a very happy girl.  And Nolan was jazzed too.

 I had to include this picture because I have major hair envy. 

 Pre-op x-rays.  No change.  We have been holding around 40-45 degrees out of cast for a year.  It stinks.  And I try to pep talk myself up because it's not getting worse, but still...
 This girl is OBSESSED with baby squirrels.  Baby anything, really.  In pre-op, Ruby had a baby squirrel beanie and let us keep it.  It may have been the highlight of A's week. 
 It was a LONG tiring day. 
I was ready to go home.  But she wanted to head down to the play area and burn off some energy.  Seriously?  Always full of surprises.

I wish I could say more.  Or say something positive.  But right now I am just in this weird sad headspace.  I know I have so so so much.  And I should be thankful.  But a big part of my heart breaks every single day when I think about how hard this has been (on me).  I think Allyn has handled it beautifully and Nolan has been a trooper.  And I think even Ben is much more gracious given the situation.  But I know things will look up again.  I just hope it's soon. 


Kelly Stamps said...

I"m so sorry Shelley. You have every right to be sad (or angry or a million other emotions). I can only imagine how draining this is on your and you always seem to take it so in stride, never complaining.
I think of Allyn so much and pray that she continues to make steps every day. She is a very special girl. And you are a very special mom!

Cindy Dy said...

I like the way on how you put up your blogs. Wonderful and awesome. Hope to read more post from you in the future. Goodluck. Happy blogging!