Stronger everyday

After Eliza's surgery, we stayed in Minneapolis for an extra day to let her heal and rest before traveling. Here she is at breakfast in the hotel. We had a quiet day which was good for all of us. 

Traveling home was challenging, but it felt good to be here once we made it.  The airport was very crowded, security lines were slow and long, the TSA agent wasn't gentle enough and it hurt Eliza for her knees to be pat down, and transitioning in and out of the plane and car takes lots of energy when you are in pain and need crutches to walk.  Basically, getting Eliza safely and comfortably through the whole traveling process was difficult.  Each time we've traveled home with Eliza after her surgeries, it's been hard.  We have appreciation for people with special needs when we see them in the airport.  This time when we traveled it made me think about the fact that you don't always know what someone is dealing with when you see them.  It is a good reminder to extend grace to everyone.  Take a deep breath and exercise patience.

Since we've been home, Eliza has healed and gained back her strength quickly. She needs less pain medication each day and gets around pretty well now.  It's been good for her to have some downtime with family and friends.  Hopefully she'll be ready to head back to school on Monday.

Yesterday the hardware from Eliza's knees arrived in a package from Gillette. It is heavy and big. We knew that it was pretty substantial when we saw the X-rays, but seeing it and being able to hold it allows us to better understand her surgery. 

Eliza is very happy to have this challenging chapter of life behind her. We are too. The timing is good as she gets ready to graduate from high school in a few months and move away for college. Not everyone comes through a disability with so few limitations afterward and we know that.  It's humbling to recognize.  Gillette will always be an important place to us. I anticipate that we will stay connected there through the parent steering committee, other opportunities for Eliza to share her story in order to help others, and staying in touch with Dr Novacheck and other staff. Now we look ahead and feel excited about Eliza's future and the benefit of mobility and the relief of chronic pain. 

Eliza has another surgery behind her

On December 26, all 4 of us flew to Minneapolis for Eliza's final round of appointments and surgery at Gillette Children's Specialty Healthcare. Though this trip isn't really for anything fun, and Minnesota isn't exactly a balmy, tropical winter vacation destination, we appreciate the fact that we are all going together as a family. Most important, this is a final important step in bringing Eliza greater health, mobility, and quality of life. 

The morning of December 27 began very early with an appointment in the gait lab. This was Eliza's third gait analysis in the past 4 years. During the lab, physical therapists do an exam of her lower extremities including measurements of her joint mobility. Then she is videoed while walking and running across a room with sensors built into the floor. Next, reflectors are glued on her joints and other parts of her body that interact with high motion cameras, capturing an accurate animation of her that can be analyzed for her specific movements and skeletal alignment. 

Later in the afternoon we met with Dr Novacheck. He has been Eliza's doctor since our first visit

to Gillette in the summer of 2014 and has done all of her surgeries. We trust him and appreciate his vast knowledge of gait abnormalities and how to correct them, his kindness, and his genuine care of Eliza and our family. In the appointment we reviewed the data collected at all three gait analyses and saw the huge improvement in Eliza's gait and alignment. We reflected together on her journey, acknowledged the difficult road it has been and the extensive surgeries and recoveries that got her to where she is today. He is pleased with her progress and so are we. As I stated in my last blog post, she has come through such painful and difficult challenges and ended up better than we ever hoped. Her joints will always have the potential of being painful and problematic and she's at a higher risk of injury than the average person due to the ligament laxity, but the surgical correction of her condition allows her to be active and staying strong and fit should keep her quality of life high and risks for joint problems lower.

I forgot to take a picture of Dr. Novacheck and Eliza this trip, but here is one from a follow up visit to Gillette after her last surgery. 

On December 28, we headed back to Gillette, this time for the hardware removal.  After her last surgery, plates and screws held her femurs together while they healed and it was time for those to come out.  Though this third surgery was minor compared to the last two, surgery is never fun.  Thankfully, everything went well and within an hour or so, she was back in her hospital room for recovery.   

Though her face tells a different story in these pictures, I really do think Eliza was happy to have her parents and older sister by her side before and after surgery. 

This time, there are no hip to toe casts, just ace wraps to help keep her incisions protected and give her legs some compression in the first day of recovery. 

By 3:00 in the afternoon, Eliza was doing well enough to be discharged.  We made it back to the hotel with no difficulty and Eliza was able to slowly walk with crutches to our room.  Today our focus is on pain management.  It's difficult to keep her down, but oozing incisions have put her on forced bed rest for the rest of today after a phone call to the nurse.  We know she has a few difficult days ahead, especially a day of travel, but she is already doing so well that we trust her recovery will be smooth.   

A Very Over Due Update

It's been a very long time since I gave a report on Eliza's progress. She healed well from her femur surgery, actually better than anticipated. Within 8 months she was dancing on stage as Cosette in Les Mis.  I'm sure most people seeing her today would have no idea what she's been through if they didn't know her story. At her one year follow up appointment at Gillette last winter, Dr Novacheck was very pleased with how she healed and how hard she worked in recovery to rehabilitate and learn to walk again. 

Now Eliza is a senior in high school. Besides her school work and friends, she is busy with 2 choirs at school, singing in the praise band at church weekly, being the choir council co-president, taking piano and voice lessons, and youth group. She is happy and full of life. It's all we could have asked for and honestly more than we expected. 

Here are a couple of pictures of holiday choir activities. 

Later this we we head back to Gillette Children's Hospital in St. Paul, MN. Eliza will have another gait analysis to confirm that everything is lined up as intended. Then the following day she'll have outpatient surgery to remove the hardware from her knees. Though Eliza will always have challenges, we are happy to be *hopefully* wrapping up this long journey. 

A Month Later

It's been awhile since I posted.  In the last month, Eliza has made so much progress.

Starting the second week of March, Eliza went back to school for partial days.  Living across the street from the school allowed us to skip one of the difficult transitions in and out of the car since we just walked her in her wheelchair.   This week she is going to school full days.  Though she is tired and has swollen legs at the end of the day, everything seems to be going ok.  Thankfully she is mostly caught up in her classes and should finish off the school year well.

We were able to have x rays done here in Traverse City and then sent to the surgeon in Minnesota, which saved us a trip back.  It looks like she continues to heal and the bones are growing back as expected.  

Besides school, Eliza has started to go back to her other activities as well.  Her voice teacher came to our house for a few lessons and we think Eliza can hopefully get safely into her house for a lesson this week.  Piano lessons resumed by FaceTime in our living room, though this week she was able to go the studio instead.  Another great achievement was signing with the praise band at church again.  It's amazing how easy it is to take these activities for granted.  We once again appreciate what being mobile and healthy allows and how different life is without being involved in things that are important.    

Once we had confirmation from Dr. Novacheck that the most recent x rays showed recovery was on track, Eliza started doing more weight bearing exercises in physical therapy.  Using the safety harness she can walk with just walking sticks now.  Around the house and at school she only uses a walker and the wheelchair is saved for long distances.  

Life is getting easier.  Eliza continues to move in the right direction.  A true example of Grace!  

"I Can't Stop Looking At My Feet"

Working on good posture and good gait while learning to walk again, Eliza has been instructed to look straight ahead with her head up.  Frequently she needs reminders as she looks down often when she is using her walker.  After a recent reminder, Eliza told us that she just can't stop looking at her feet because she can't believe how straight they are now.

She is walking more and more every day.  The ability to stand up herself, holding onto the walker, and walk a distance has greatly improved.  In fact, over the weekend Eliza decided her goal is to only use her walker when she is in the house.  Her wheelchair stayed mostly parked this weekend while we were at home.  

Many great experiences help keep Eliza's spirits up and make the recovery period more enjoyable.  

On her birthday last week, Eliza's choir walked to our house from school to sing 'Happy Birthday' and  bring her encouragement.  Earlier in the day her French class FaceTimed her to sing 'Happy Birthday' in French.  

So many friends have come over for lunch, or after school to visit.

Because she is more mobile now, it's easier and safer to take her out of the house, so we have taken her on more outings.  Going to see her friend, Claire Lane, in Shrek at West High School was a highlight of last week.  Getting back to school is next!

Just What We All Needed

It was great to see Claire for weekend visit.

We are grateful for FaceTime and texting which allowed us to keep in touch throughout Eliza's time in the hospital and recovery in Minnesota.  Nothing matches an in person visit though.  

Because Eliza's birthday is coming up this week we had a celebration while Claire was home.  We were fortunate to also have 4 grandparents to help celebrate.  There was lots of love for Eliza. 

Going to church and spending time together at our new house was a fun way to end the weekend.  Claire is a great big sister and I know that time together was just what we all needed after a stressful month.  Silliness and laughter boosted everyone's mood.  Love you, Claire!