Saturday, September 14, 2013

One Month Ago

One month ago today Scott was admitted to the hospital (today is also Evan's 8 months birthday).  What a crazy ride it has been. We have covered four hospitals and three states. Our lives have been changed forever.  Scott was transferred to Madonna Rehab hospital in Lincoln, NE on Wednesday.  It is a step in the right direction and we are very thankful for that.  I know that we will still have setbacks and hard days, but knowing that Scott was able to get out of ICU and move to a long term acute care facility is good news.
I brought the kids up to the ICU the day he was discharged.  It was great for both to see each other.  I was worried about how Hannah would handle the situation, but she surprised me and handled it like a champ.  She was quite intrigued with everything at the hospital.  She has been asking lots of questions about why daddy can't talk and why he can't move, but she is OK with all of my answers.  Evan just lit up when he saw Scott and it was priceless.  It was a very emotional moment to finally see Scott with the kids.  Now that he is out of ICU I will be able to bring them up more often.  I think it will be the best therapy he can receive!
Scott receives a total of 2 hours of therapy every day.  He has two 30min Physical therapy sessions, 30min of Occupational therapy and 30min of Speech therapy.  This really wears him out (but he still doesn't sleep good at night).  We feel really good about the decision we made to come up here.  The staff is wonderful and they have a lot of experience with Guillain Barre Syndrome (they see about 50 cases a year from all over the country).
Most of the steps are going to be small now, but we had a huge step this week by putting in a speaking valve on the trach.  Scott has been practicing hard on speaking with that and his voice gets stronger every day.  I know it has to be a big relief for him to be able to communicate better.  It tires him out to talk, but it is nice knowing that he can be heard!  We have seen a little bit of movement in his right arm.

Today has been tough day for him, so please keep him in your thoughts and prayers.  Praying that tomorrow will be a good day again.

My mom is coming in tomorrow to spend a few weeks with us.  I am excited to see her.  It will be nice to have an extra set of hands to help.  I also found an apartment that we will be able to move into on Monday.


  1. Bless you! I found your story through Hannah, actually when your son was born and in the hospital. You've been in my constant prayers!

  2. I follow your blog and just want to tell you I am praying for your sweet family. You are so strong and I know it must be hard dealing with all this but you seem to be keeping it together.

    Praying for strength for you to continue to handle all this and strength for Scott to heal. Praying for your sweet children and for all they have been dealing with also.

    A reader from Colombia

  3. Hi! I'm Sarah and Geoff Webb's friend. My husband came down with Guillam-Barre when we were living in NYC in 2008. By now, I'm sure you probably know more than we do on the subject, but if you'd ever like to talk, please don't hesitate to contact me--elizabeth.repass.hollida (at) We're praying for you all! It will get better!