Thursday, February 5, 2015

Cast Ten

 On January 19, at 5:30 a.m. we all headed to Oak Park to have Cast #10 applied.  Every time I say or think "ten", I just can't believe we are this far in.  Ten casts.  Twenty months of serial casting.  Allyn has spent more days of her life in a cast than out.  To say I was super hopeful and optimistic that there had been some correction in this cast would be a gross understatement.  I needed to hear that we are seeing correction. 

So the night before, a special little dolly got her last bath until probably April.  I try to soak up these easy moments in the bath that we both love so much.  The smell and feel of her skin after.  The joy that she has as she splashes in the water. 
 AND THIS FACE!  When she comes out all nice and clean. 
  She has reached the age that she knows exactly what is going down when we head into the hospital. It's tough on me and I know she is scared.  I used to think this would be one of those things she would have no memory of.  But now that she is getting older, I'm not so sure about that anymore.  But I want her to know that every time we took her in, it was to give her a better chance at the best quality of life.  As hard as the days are for everyone.  So there were a lot of tears that day from check-in all of the way through pre-op. 
 We headed to radiology this time and got a lot of x-rays.  Our geneticist suggested we do a complete skeletal survey to see if she had any type of dysplasia or other orthotic or bone growth issues.  We may be looking into some more alternative (because what is more alternative than serial casting for a spine?) therapies to help her growth but we kind of need to know if there is something else going on and her genetic microarray came back normal and her endocrinology results came back normal.  We also did a muscle biopsy while she was under general anesthesia that day just to more understand our baseline and any possible underlying conditions that may explain her overall low tone, short stature and inability to gain weight. 

The x-ray still shows her around a 40-degree Cobb.  This is where we have been since April of last year.  It was tough to hear that.  I didn't cry but I wanted to.  All of this work, and we are not seeing positive numbers.  I just pray that there is some good that comes of this season of our lives:  less rotation and better symmetry, increased lung volumes, something...anything.  Because as it stands today we are looking at a long road of surgeries for this little sweet potato.  The thing we were trying so hard to avoid by serial EDF casting. 

And now we have decisions to make.  Do we keep casting?  She had issues with coming out of anesthesia again.  This is the third time.  And she has been under general anesthesia eleven times in her short little time here.  And as a parent, you get nervous every time.  So now we have to talk with her surgeon to determine next steps.  I feel okay with going to the two year mark for casting and that will give us two years of growth of her thoracic spine.  But if the numbers are not improving we may have to look at switching to a brace and hoping that can hold her until she is big enough for surgery. 
Poor doll was just pitiful when I got to pick her up in post-op.  She nursed and snuggled and fell asleep.  And then to keep it interesting, she peed out of the side of her diaper all over my pants. 
We made it home just in time for both of us to take a nap while the boys played.  

1 comment:

Deena said...

I just want to tell you I think your peanut is one of the most beautiful girls I've ever seen. I pray #10 cast helps. I know how hard it must be on your Momma heart to watch her go through another round of casting.