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.

Monday, December 2, 2013


We had a wonderful time celebrating Thanksgiving last week.  Amy and the boys came into town to spend the holiday with us.  We pre-ordered a Thanksgiving feast from HyVee and that was the best decision we ever made:).  The food was really good and it was so much easier and hardly any clean up.

We have so much to be thankful for this year.  It has been a crazy year for us and I can't believe that it is already December.  Don't get me wrong I have spent some of my longest days of my life during this year, but on the other hand it has also flown by.  We have spent almost half the year in a different city at a hospital (Little Rock with Evan and Kansas City and Lincoln with Scott).  We haven't been home since August.  Yes, we are ready to head home, but we are just so thankful that we were able to be together as a family during these difficult times.  Home truly is where the heart is.  I am ready to give up apartment living though.  I don't mind the space at all, but the noise from the people above us is tough:).

We are so thankful that Scott continues to make great progress.  He is walking with one cane now and can even go without a cane for a while.  Pushing Evan's stroller is actually great for him.  It gives him the stability he needs and he is walking more "natural" than with a cane.  He still experiences a lot of pain and we are hoping that will subside soon.  He hit 29 cones during his simulated driving test last week, so he probably won't be driving anytime soon:).

We are so thankful for the support we have received from friends and family.  It is amazing to see how people come together in time of need.  It has made us want to be better people and help others out more.  The generosity of everybody around us is very humbling.

Evan being sick when he was born and Scott's illness has changed our lives forever.  We have learned that it is important to be thankful every day.  We are thankful for big and small things.  We don't take everything for granted anymore.  We try not to let little things stress us out.  We are thankful for the life we have.

We are thankful for the incredible people we have met during our journey.  I admire the nurses, doctors and therapists.  I know I could not do their job.  I admire the strength of the other patients we have met. Some of the stories are so heartbreaking and we are thankful that we are seeing so much good progress with Scott's recovery.

And of course we are so thankful for these two little turkeys:).  These two have given me so much strength (which is kind of funny to say, because most days they wear me out and I am exhausted) during the last few months.  They gave me lots of reasons to smile during the dark and difficult days.