Thursday, December 12, 2013

I'll Be Home For Christmas

We have been enjoying our last days here in Lincoln, but we are so ready to come home.  Ever since Scott was discharged from the hospital 5 weeks ago we have been trying to make the best out of our stay here.  Scott still spends most of his day at the hospital doing therapy, but in the free time we have been exploring Lincoln a little.  We really like this town.  There is a lot to do for families.  We are making sweet memories.
Lunch in the Haymarket district
Hannah wearing Sara's sunglasses and Evan had to get in on the fun

We went to the Children's museum (such a fun place)

We have gone out to look at christmas lights twice
Last night we went in our PJ's to Starbucks to get a hot chocolate before driving around and looking at christmas lights

We played in the snow

Scott's therapies are going well and he has made so much progress.  He is walking really well and ditched the cane (he is only wearing his braces)!  Last week Scott asked for a meeting with the CEO of Madonna.  The ladies in the office didn't really know what to say......apparently it doesn't happen very often that a patient wants to speak to the CEO (only Scott would do that).  He wanted to share his experience at Madonna with her and ask her for two things.  Scott found out before the meeting that the CEO had Guillain Barre Syndrome a long time ago.  Scott would like to set up a list of former GBS patients that are willing to talk to current patients about the illness.  It is such a rare illness that it is easy to feel alone and hopeless.  Most of the time you will be the only patient with this illness at the hospital and that can be challenging.  You also feel like you don't fit in anywhere.  The hospital has a spinal cord injury unit, a brain injury unit , cardiac unit ect and GBS patients don't really fit in these units.  So, having somebody you can talk to that has been through this would be HUGE.  I know we would have really liked that.  We looked for stories/videos on youtube and watched those to give us hope.  The second thing Scott talked to her about is setting up a fund within the Madonna foundation specifically for GBS patients.  The fund can be used to pay for a hotel room for GBS patients families or for walking braces ect.  She agreed to it and Scott is helping to get the ball rolling on it.  I am so proud of him for this.

1 comment:

  1. Wow, that does sound like Scott to ask to speak with CEO. Once he figures out how people can donate, please share. I am so glad you all will be home for Christmas. The best present of all-health.