Preparations

  

 

Surgery is scheduled for one week from today.  There are many things to do in order to be ready, especially since we are traveling a big distance to the hospital and will be staying an extended length of time.  Thankfully we're crossing things off the list every day.  We appreciate all of the concern, well wishes, and offers to help.  It makes this whole process so much easier to have such a great support system.

The Next Phase

 

 

It's been more than a year since I've posted an official update.  Eliza is now a sophomore in high school.  She's busy with school, choir, piano, church, musical, and her friends.  As you can see from the shoes in this picture, Eliza has come so far.  These aren't great shoes for her to wear, but the fact that she can put them on and walk is amazing.  Even last year this couldn't happen.  Though she has some challenges with her left leg and foot still, they are relatively minor and it doesn't stop her from participating in most activities.

Chronic pain is still part of her life, but thankfully it isn't as debilitating as it was before her surgery.  Now the pain seems to be focused mainly in her knees.  As I mentioned in the last blog post a year ago, Dr. Novacheck recommends additional surgery to re-align her femurs.  This surgery (bi-lateral femoral de-rotation osteotomy) will straighten her legs and relieve some of the pressure and pain in her joints, especially her knees.

In a couple of weeks we will travel back to Gillette Children's Specialty Healthcare in St. Paul, MN for surgery.  For Eliza, and the rest of us, it is hard to face.  We know better what we are heading into this time.  The good part is that we trust Eliza will be stronger and have a greater quality of life because of the surgery.  Benefits will be life long as having her legs in better alignment will hopefully prevent joint deterioration that she is at risk of currently. 

After spending most of a week in hospital, we will move Eliza to an extended stay hotel for the first few weeks of recovery.  Since she won't be able to bear weight on either leg, she will need full handicap accessibility and, after our experience with her previous surgery, we know waiting to travel will be easier on her (and us!).  We are so grateful to my parents for making the trip with us, and staying with us in St. Paul.  That will allow Dan to return to Traverse City for work once Eliza is settled.

The next couple of weeks will be full of preparation.  Watch for more updates as we travel. 

Moving On

Last week we made a trip to Minnesota.  Eliza had an important follow up visit at Gillette, and we enjoyed time with family and sight seeing.  Coming up on the 1 year anniversary of the surgery, Eliza had another gait lab, as well as x rays and an exam by Dr. Novacheck. 

The gait lab is a very interesting process.  It began with measurements taken of joints and assessment of mobility.  Then little reflectors are glued in place all over Eliza’s body.  There are many cameras in the gait lab, as well as sensors in the floor, that recorded Eliza and give a clear picture (if you are an expert and know what you are looking at) of her bones and joints and the way she moves and walks. 

This is the same technology that is used in the film industry to create animation.  Here is a picture of Eliza's animated figure on the computer.  

From the visit, we learned that Eliza is doing well nearly one year after the surgery.  The bone grafts and cuts have healed completely.  Soon we will schedule an appointment to have the hardware removed, which should help with some of the swelling and pain she still experiences in her ankle.  She will also work on some more PT exercises to continue to strengthen her foot and ankle, which will also help alleviate ongoing pain and swelling. 
When she had the surgery last fall, we knew that it was addressing only some of Eliza’s orthopedic concerns.  At that time the mal-alignment of her foot and the twist in her tibia were causing severe pain and needed to be fixed.  Right now there are no other acute problems, though her knees are stressed due to some different skeletal issues.  The pain she experiences now is fairly mild.  This will be something to monitor and additional surgery might be needed at some point to help preserve her knees as she ages to an adult.
Overall we feel so grateful for where she is today compared to a year ago.  It’s almost unbelievable.  The care and compassion of everyone we encountered at Gillette Children’s Specialty Healthcare helped so much in dealing with a very difficult situation.  We are also grateful to our wonderful family and friends who held Eliza, and us, up through a pretty challenging year.  THANK YOU!

10 Month Later

It’s been awhile since I posted an update.  As I read through all the older posts here, I realize that there was a lot of repeating similar reports about Eliza’s healing.  She made progress all along, but it was slow.  Painfully slow at times. The ongoing surgical pain and swelling made us worry.  We wondered after so many months of chronic pain, followed by so many months of healing from surgery, would she really be better in the end?  Though she isn’t 100% yet, I’m amazed how far Eliza has come, and what she is capable of doing now.  In June, she went on a mission trip to Kentucky, working with the Appalachia Service Project.  All of us, including Eliza, were nervous about how it would go for her.  As you can see by the picture above, she was able to do a hike in the mountains with her group on their adventure day at the start of the trip.

From all reports, she was able to keep up with her team and do important work to help a family in need.  What a great confidence builder and a great life experience.

For the first time in more than 2 years, Eliza can participate in things like hikes and walking to the beach at sunset, as well as getting around every day without the need of crutches or a scooter.  This is a huge step and one that we can’t take for granted.  In a couple of weeks we’ll head back to Minnesota for a visit with the surgeon.  For now, she is enjoying summer and getting ready to be a high school student in the fall!

Eliza vs the Ice on Lake Michigan

Today we took a family trip to Empire Beach to see the ice formations on Lake Michigan.  Eliza walked out on the icy lake and climbed on the ice without any trouble.  Her foot is pretty swollen and sore now, but what an accomplishment.

Crutch-less

Eliza went to the first day back to school without crutches.  Sounds like it went pretty well and she only experienced mild pain and swelling. This was the first time without crutches at school in many months, probably almost a year ago.  It is a pretty exciting step in her recovery!

Back to Gillette Again

Eliza and I made a very quick trip back to Gillette this week for another recheck.  We had some crazy travel issues, but we made it there and back and had a good appointment.  The day started out so beautiful as we took off from a very overcast Traverse City airport and then enjoyed the sunrise above the clouds.

Though Eliza hasn’t ridden in the wheelchair for a few weeks now, it did feel like great progress to return it to Gillette.  It was definitely a help for the most challenging weeks of recovery.  Now we wish the next patient that needs it well, while being thankful that Eliza’s turn is over.
Dr. Novacheck said that Eliza continues to heal well.  The X-Rays show good bone regrowth.  Now the instructions are to work hard at PT to rebuild strength.  He challenged her to be off crutches when she goes back to school after Christmas break.  By spring she will hopefully be dealing with much less surgery pain and swelling with weight bearing and can hopefully be able to better participate in many physical activities. For nearly 2 years she has been so limited in what she is able to do, we are excited about the possibilities.

Sometimes you don’t really appreciate what you have until you don’t have it anymore.  I hope that is a lesson that Eliza and our family will internalize after this experience.