News

Tonight I have nothing but news to share.  Good news, though.  My favorite kind.  I posted about Angie's insurance rescinding the authorization for her therapy until after her botox injections and another evaluation were completed.  Yesterday after her speech therapy, the director of the billing office said NO -she will have her occupational therapy today.  Yeah for Angie!

Angie had not seen Laura, her occupational therapist, since December (while we waited for the insurance authorization) and she had so many new skills to show her. She was amazing!  Identifying letters, counting, even writing her name.  Oh, and she swung on multiple swings, her favorite part of the hour.   Laura wholeheartedly agreed that it was time to try the botox injections because Angie's muscles have become much tighter over time.  Perfect timing, she said.

Today, Angie had the long-awaited botox injections.  I was not sure what to expect so I was surprised to learn that the injections were given while she was awake and without a local anesthetic-straight into her muscles!  Angie was given a medication to make her loopy but she was wide awake and watching the injections the entire time.  That girl!  She flinched but did not make a sound or move while "Dr. Steve" completed the injections.  Dr. Steve was hugely impressed and told her she was a rock star.  Well, yeah.  I am so humbled by her.  Every day.  I have been really frustrated with the ongoing behavioral challenges but then I have an experience like watching her today and I am overwhelmed by the honor of caring for this child.  And ashamed of myself. Why are we so quick to forget?

 Does she look a little loopy to you?  Definitely yes.

That's not all, though.  I also attended IEP meetings for both Levi and Angie this afternoon.  The details of the meetings are not as important to me as the overall impression I came away with.  Amazing.  We are so blessed to have a team of people who clearly have the best interest of children in mind.  They care deeply and they work long hours to develop the most effective program for each child they serve.  They are so undervalued.  It is a privilege to be a part of something that makes such a difference in our children's lives.  I almost feel sorry for parents who do not have a child with special needs because they will never know.  Almost.

So much to process tonight.  Tomorrow Angie and I will go to OSHU to participate in a lecture designed to teach medical students about Sturge-Weber syndrome and hemispherectomy surgery as a treatment option.  She is such a gift and a leader in many ways.  I have said it already, but I cannot say it enough.  I am honored to know her.