Mira smiles and Ashley cries!

Mira is three and half weeks old now and she's been smiling at us for a few days now.  I wish I could have a camera strapped to my head to catch all the precious moments, but unfortunately I've missed the biggest smiles.  I did capture a small smile and I'm sure there will be more to come.  The best part is watching Brodie giggle with her and get her to smile at him.  It's been a long wait for these moments...

Yesterday we had an appt at Rehab Centre for Children.  We met with Dr. Skalsky to assess Ashley's Scoliosis (her spine is significantly shifted to the side).  He told us that this happens with growth spurts, and Ashley has definitely been growing a lot!  We also discussed her discomfort and posturing.  Since Sunday she has been crying and posturing more and more each day.  We've increased her Risperidone today, but the reality is that it won't help for long.  Ashley's irritability and crying is related to the posturing she does (she twists to the left and arches back, stiffening her body).  It's called Dystonia. 

Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.^[1] The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to pharmaceutical drugs, particularly neuroleptics.^[1] Treatment is difficult and has been limited to minimizing the symptoms of the disorder, since there is no cure available. (taken from Wikepedia)

Dystonia is progressive and for Ashley it is a result of her damaged brain.  Research has shown that there is very little that can be done, so we'll continue trying to help her find comfort with medications that can help her relax her muscles.  It was good to know that this is something common among children with brain damage, and not a result of something I was doing wrong.  One can't help but try to figure out what to do differently when you're child is in agony, but nothing I've tried has helped for any length of time.  And yes, I have explored every angle.  More stretches?  Quiet time? Warm baths? Hot baths? Cuddles? Music? More food?  Different food? Foot massage?  ect...   Nothing works consistently, and her crying is not related to anything, other than the fact that she is worse when she doesn't sleep at night.  So, our first goal is to keep her sleeping at night.  Unfortunately, the Risperidone that helped her sleep at night for a couple weeks has already dropped in effectiveness.  She's becoming tolerant to it already, and we find her crying/posturing in the morning for the past few mornings.

So, there it is.  We'll just put on a smile and continue to pray for Ashley's comfort!