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.  

Monday, November 18, 2013

10 Months

Can you believe this little guy is 10 months old?  I sure can't. 

He has become such a busy body and is into everything.  He is crawling and that has made him so much happier.  He can finally get to where he wants to go and doesn't get frustrated anymore.  He pulls up on everything and bonks his head a lot in the process.  He loves to stand up (the toilet and the bathtub are two of his favorite places to pull up on).  You love to open the cabinets and pull everything out.  We are going to need to baby proof the house ASAP when we get home.

I find him in this position very often.....getting ready to pull everything out of cabinet

He is a big boy and weighed 21lbs 6oz and was 29 3/4 inches long on October 29th.  He is a sweet little boy and has the best belly laugh.  Hannah is the only one that gets him to laugh all the time.  I love watching them interact, it just melts my heart.  

We think he is going to be all boy.  He is a lot rougher than Hannah was and he just loves to bang everything together or against the wall and he never sits still anymore.  After he hurts himself on something he cries for a minute and then goes right back to it again (for example doors or drawers).  He does not really like to read books, because he just wants to eat them or bang them against the floor.  

He loves to feed himself and prefers table food over baby food.  He loves to chew on a piece of bread and will sit there forever, content as could be just slobbering all over it:).  

He is very talkative and loves to just make all kinds of sounds especially in the car seat. 

It is so funny he always starts clapping when we say "yeah"!

Sunday, November 17, 2013

These Boots Are Made For Walking......

Scott has done a lot of walking in the last week.  He started the rehab day program on Monday and it has been a good week for him.  He practiced walking with two canes, then one cane and most importantly he walked without assistance for the first time this week since August!!!!!!  It was a really big and exciting day.  He still has to use the walker most of the time, but with his therapists he uses the cane. The goal is to go home with just a cane in four weeks.  Scott has to wear AFO's (Ankle Foot Orthosis) all of the time.  AFO's are used to treat foot drop, position support and general weakness.  I am amazed to see the fast progress he has made.  I know his determination and motivation plays a really big role in his recovery and for that I am so proud of him.

On the icare elliptical without any support

Walking for the first time since August.  What a huge accomplishment.

I really wanted to share a video of Scott walking, but I can't figure out how to upload it from iphoto to blogger.  It keeps giving me an error message.  If anybody knows how to fix that please let me know!

We have been focusing on making this into a positive experience.  It has been a really hard journey for Scott and our family, but we have also learned so much about ourselves, our family and our strengths.  After hearing and seeing so many other stories from patients at the rehab hospital we feel blessed with the prognosis that Scott has.  He is getting better and will be able to walk again.  Many patients at the hospital are not in that position.  Many of those people are truly inspiring, because they are also still looking for the positives and are Scott's biggest cheerleaders.  We have met some wonderful people during this journey and we are so thankful for them.  The support and outreach has been amazing and we can't thank everybody enough.  This experience has made me want to be a better person!

Thursday, November 14, 2013

What The Rest Of The Family Has Been Up To...

I haven't had a chance to post many pictures lately, so here we go......

We visited the pumpkin patch a few times on a beautiful morning

We visited the Lincoln Children's museum and played and played
During Scott's first time to leave the hospital he bought Hannah a little fish tank.....the newest members of our family.  The only problem is that the tank is a little too small for 3 goldfish, so I have to clean it every day.
Aunt Ashley came to visit for a few days and she had a birthday earlier last month, so Hannah planned a party for her.  She was super excited and picked out a cake to bake, picked out balloons and a gift.
Here is her masterpiece of a cake.....
Little diva is getting ready for the cold weather here in Nebraska
We celebrated Halloween.  Hannah had a party at school in the morning, then she trick or treated at the hospital and then again at night.  It was a busy day! Sad thing is I don't have any pictures of Hannah in her witch costumes.
Scott and Evan made lots of people smile at the hospital with their costumes.
The man in the yellow hat and curious George
Cute little monkey....
Silly boy