Monday, April 13, 2015


We made it home Saturday afternoon. Showers, baths, real food, real beds... all the little things in life that make things so nice.

Will is about 90 percent back on his speech. It's still somewhat labored and slurred, but we're working on it.

Will is about 60 - 75 percent on gross motor skills. His gait is uncoordinated and slow and he seems to be having the most problems when he's stopping and starting. He can walk short distances on his own, but it's very difficult to trust that he will be okay on it. We'll be doing PT three times this week and will continue that for as long as needed.

Will is about 90 percent on "being connected" - one of the symptoms is this kind of far off look, disconnected with what's happening and what I would call disoriented conversations. He still seems a little spaced out but significant improvement.

The stamina and energy levels are still in question... he's been lounging for 90 percent of every day. We're going to try and make an outing every day - even if it's just to Target. Next week is his birthday. We're going to go to celebrate at school with his friends and still planning to do his birthday party.

Hopefully he might be able to go back for some half day's at school in late April or early May. We have an appointment on Friday with Dr. Koenig to check in and make sure we're not going backwards.

At this point, it's just day by day.

Thank you all for the amazing outpouring of love and support.

Will's teacher and the entire school have been amazing. They came bearing all sorts of surprises which made our 6 day stay bright and happy. Hopefully we can deliver some thank you's this week. 

I really want to thank my husband. I read an amazing article about "What you don't realize about the dad behind the diagnosis" -

This article captures our lives down to the exact words. This past week was insanity and there's no way anyone could have done it without an amazing partner.

Will is our superhero and it takes two people to make this superhero happy.

Maybe it takes three people - the smallest one makes him happiest when she's not being crazy :-)

1 comment:

  1. So glad the whole family is home together! Keep up the good work, Will and Mom and Dad and Quinn. You are an amazing family.