Getting Out

For the first time in 11 days, Eliza left the hotel!  It wasn't easy to figure out how to safely get her into the car, but now that her knees bend a little bit, we were able to do it.  There were only a couple of problems, like when I pushed the lever and the wheel chair leg rest fell down quicker than I expected, taking Eliza's leg with it.  I felt terrible, but she seems to have forgiven me already.

You can see Eliza's feelings about finally getting outside in our family group text.  When we were eating breakfast this morning, then temp was 1o outside.  By the time we left, it was up to 3o.  We decided to go to the Mall of America since it provides miles of walking indoors and we weren't up for the freezing temperature .  

After spending a couple of hours at the mall, we are back.  Eliza's showered, done PT and is in bed elevating and icing her legs.  She may be done for the night, but it was so good for her to finally breathe some fresh air and get away from 'home' for awhile.

"So Happy I'm Crying"

This was the picture and quote that was texted to me this morning while I was at a celebration of the 30th anniversary of the gait and motion lab at Gillette Chidlren's Specialty Hospital.  Eliza was back at the hotel with my parents.  During her daily PT exercises, Eliza decided to try sitting on the edge of the bed and was pleasantly surprised when her knees bent so she could sit. 

Yesterday and today I had the chance to give back a little and celebrate the 30th anniversary of the lab that helped diagnose Eliza's gait abnormality and plan both of her surgeries.  In 2014, after Eliza's first surgery, Dan and I were invited to be a part of a parent advisory committee at Gillette.  Typically we 'meet' during monthly conference calls as we live all over the country and the world.  As a part of the 30th anniversary celebration, it was decided that we would have a face to face meeting and dinner for those of us who were able to attend.  It was easy for me, since we are right in the middle of Eliza's recovery and still in St. Paul.  It was great to be with a former patient, some other parents of Gillette patients, as well as get to know some of the staff better.  Learning more about the history of Gillette and the gait lab was very interesting and that, combined with the connections I made, helped affirm that we made the right decision to bring Eliza here for another opinion and treatment.  

A Few Days Later

In the past few days since I posted, Eliza continues to gain strength and healing.  Now with the PT, she is able to lift her knee some by herself.

Her range of motion and ability to stretch without pain in her incisions has also greatly improved.  For the past couple of days Tylenol and ice have been her main pain relief.  It feels like a huge accomplishement to rely on less pain medication for so many reasons.

Eliza is now known by many of the hotel staff and she is greeted at breakfast each morning.  To break up the day, we enjoy spending time in the lobby with the fireplace. 

Eliza can drive herself most of the way down the hall and just needs help around some of the tight corners. 

We are thankful to my parents for all their help.  It would be very difficult to manage with just me and Eliza.  Actually it probably would not be possible.  All of the cards, care packages, FaceTime, texts, and other messages have brightened the days and helped make recovery more pleasant.  THANK YOU!  

There are still challenges, like painful muscle spasms last night and today, but Eliza is managing well.  She has an amazing amount of determination and patience.  We still have a couple of weeks here before heading home.  Hopefully by the end of next week we can get Eliza safely in a car and she'll feel up to getting out of the hotel.    

More Sleeping, More Exercises

For the next few days, I don't feel like we'll have much to report.  Eliza did a lot of sleeping again today, and we worked on her PT excercises.  Now that we found a comfortable cushion for her wheelchair, it makes it easier for Eliza to spend time other places than her bed.  Here she is having breakfast in the lobby this morning.

Each day she is gaining more range of motion in her legs.  We still have to move them for her, she isn't able to lift or move her legs on her own yet.  She has improved greatly in her ankles and can move both, even the one with the hardware removal, quite well.  Today we could lift her legs so much higher than we could even yesterday.  After her casts came off, we could only lift them a couple of inches off the bed at most.  

We will keep working each day so she will be strong and ready to start standing again when she goes back to Dr. Novacheck in a couple of weeks.

Sleepy Day 

Eliza spent most of today sleeping.  Yesterday she was awake much of the day and now I guess she needed more sleep.            

She enjoyed a FaceTime call from her cousins.  Freddie and Charlotte each read her a book and they wanted to see her boo boos.  

Having a chance to FaceTime friends in Traverse City was made easier by the snow day there today.  

Today was also the day we figured out how to make a shower work.  It took 2 shower chairs and lots of towels, but she did it.  We also found a cushion to help make her wheelchair more comfortable.  Hopefully now she will be able to sit in her chair and spend time with us in the common area of the hotel room without her back bothering her as much.  Each day seems to bring more strength.  

     

                                                         

At 'Home'

Today's agenda included laundry, cooking, at home physical therapy, and a walk out to the lobby of our hotel.  All really exciting activities :).  It is nice to be out of the hospital and taking care of things on our own.

Eliza got up in her chair in between naps so she could spend time in other places than the bedroom.

After working with the knee immobilizers, we got them to fit better.  I think the problem is that her legs are going to be uncomfortable no matter what she does right now.  She's trying to get used to the way her legs feel and gaining confidence in what she is able to do and how to do it with the least amount of pain and discomfort.

Part of that process is the physical therapy they sent Eliza home to work on each day. Right now all of the exercises are pretty passive and require one of us to do the moving of her legs for her.  She is able to wiggle her toes pretty well now, and can move her right foot up and down slowly.  Her left foot has only a little motion, but that is where the hardware from her last surgery was removed as a  part of the surgery last week. When she left the hospital yesterday, she couldn't move her legs on her own at all.  Though she still can't lift or move them yet, she is now able to scoot herself in her chair or in bed.  We can raise her legs higher already and today can bend her knees a little bit.  It might not seem like much, but that is pretty great progress in just a day or so.  Getting to her stomach and spending time in the prone position is probably the most challenging exercise, but she did it with no complaints!  

We enjoyed spending time with Dan's cousin, Ben, this afternoon.  It's nice to have some family and a few friends of friends living in the area.  The visits give us something to look forward to on our otherwise quiet days.

    

This evening we took Eliza to the lobby to enjoy the fireplace.  Living in a hotel for more than a few days is something new to all of us.  We are finding ways to enjoy the experience.  Eventually, we  hope to be able to take Eliza on some outings, but for now we don't have a safe way to transport her.  So we are thinking of ways to keep tomorrow interesting...  Maybe card games.   

Out of the Hospital

This afternoon Eliza was discharged from the hospital.  Dan and I weren't sure if she was ready to go, or if we were ready for her to go.  They would have let her stay another day, but Eliza was very ready to go 'home'.  Home for the next few weeks is an extended stay hotel in a nearby town.  Before we left, we had a delightful visit with Sue Zell's sister-in-law.  It was so kind of her to send a visitor when we are so far away from home.

After feeling overwhelmed about how we get our daughter, whose knees have to remain straight and can't bear weight on either leg, into our car, we decided to hire a handicap accessible taxi.  It actually worked just fine to get us to where we needed to go.  

Eliza is still doing well, but it is really hard.  It's painful and her stomach is upset by medication and everything else.  Even a fairly simple act, like getting in and out of bed, is a long and difficult process.  The knee immobilizers don't really fit quite right and don't give her confidence that they will support her knees and avoid pain when she transfers in and out of her chair.

Even though we all realize how fortunate she is that this is a temporary situation, it is a hard reality  right now.  We also realize how far she has come already in the last couple of years and the hope of even better mobility and reduced pain in the future.  Today was a day of many emotions.

On the good side, just now we had a yummy dinner, prepared by grandma.  Eliza reports that her pain is fairly low, even though its time for her next dose of medications.  Ice cream will be a treat later tonight!  Both Eliza and I are grateful to not sleep at the hospital tonight.