Dealing with spasticity

First, thank you to everyone that participated in yesterday’s Bake Sale. I heard it was a huge success! I hope someone took pictures, I heard the homemade treats were incredible. I am so touched by everyone’s kindness and concern for Lily. Thank you from the bottom of my heart.

Lily is still in the ICU at Miller Children’s Hospital. Her cardiologists wanted her to remain in ICU to monitor her heart for a few more days. Unfortunately last week on the 1/4 mile tunnel walk over to ICU she did experience V-tach. Thankfully she came out of her rhythm before her ICD went off. The doctors have managed her pain and discomfort along with administering a full cycle of antibiotics for her UTI through an IV. They also started with a clean slate on her feedings. They started them very, very slow and have gradually increased them daily. So far so good.

Now we are faced with another big decision regarding her spasticity. It is managed well with medication however it makes her drowsy. And when she’s drowsy she can’t fully participate in her therapies. So now we are considering an implantable pump. This would deliver micro amounts of the same oral drug but it would have no effect on her cognitive functioning because a catheter delivers the medication directly to her spinal column, but it can make her limp, too…..Decisions, decisions…..I wish it wasn’t so hard.

Thank you for all of your continued prayers and love.
God Bless,

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