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.

More Progress

Eliza continues to get a little stronger and more mobile each day.  Physical therapy has been a great help.  It’s allowing her to be more physically active, as well as work on walking again.  Though she still needs to use the crutches to walk right now, she is bearing more weight and has more range of motion in her ankle.  The biggest joy is that her pain now is located around her incisions and no longer in the arch of her foot where her chronic pain had been before the surgery.  She has a way to go before we know for sure how successful the surgery was, but the progress gives us all hope.
Pain and swelling are still a challenge, but Eliza hardly ever complains.  Finding shoes and boots that work is not easy, but we are managing.  We are so happy that she is back to school and many of her regular activities.  During this season of holidays and celebrations, our family realizes that we have many reasons to be thankful.  

Back to Gillette

We took a quick trip back to Minnesota for a post op check the other day.
 
Eliza was most excited about getting the cast off.  This part of the process was so much better than the cast going on!  We don’t need to remember that painful part.  She enjoyed being able to shower and lotion up her itchy skin.

Here are Dan and Eliza checking out her new and improved foot and leg.  After x rays, a visit with the surgeon, a fitting for a new orthotic and a PT evaluation we learned that Eliza is healing up well.  The new goals are to start bearing weight with the help of crutches and working on strength building in PT.  It was a huge relief for us to hear that everything is looking good.  In about 6 weeks we go back for another check. 

Better Each Day

Here’s Eliza on the way to school last week.  Sorry for the delay posting, time has gotten away from us.  The update tonight is that Eliza went from going to school for a couple of hours at a time 2 weeks ago, to staying for the whole day last week.  Today was the first day she went with crutches and not the wheelchair.  Pain seems much lower now and the swelling is less, even when she is up on crutches.  As she has started bearing some weight on her foot, she reports that the soreness is not the same as the ongoing pain she has dealt with for years.  That allows us to be cautiously optimistic that the surgery took care of the chronic pain.  It will probably be several more weeks or months before we know for sure.  We all look forward to her follow up appointments and cast removal back at Gillette Children's Hospital later this week.  Praying for a good report and that she will ready to move onto physical therapy.

Recovery

It’s been awhile since I updated everyone.  Though recovery is slow, Eliza seems to get a little better every day.  Since coming home, she has enjoyed visits from friends and family, movies, cooking shows, card games, and a lot of sleeping.  This week Eliza has been able to start catching up on school work.  Yesterday she even had a short piano lesson over facetime in our living room.  Hopefully next week she can start back to school.  She’ll try some partial days first and see how that goes.  In the meantime, she’s had a couple of outings, the first to a concert (pictured above) and last night to church for dinner.  Fresh air and a change of scenery seem to do Eliza a world of good.  The challenge she faces in getting back to a regular routine is that her leg still swells and becomes painful if it isn’t elevated.  Also, she wears out pretty quickly.  She is getting stronger and stronger and no longer needs a lot of the medications which were causing her to sleep through much of the day.    The prayers, cards, visits, dinners, love and concern mean so much to all of us and it helps more than I’m able to express in writing.  Thank you all so much.

Home Again, Home Again

After a couple of cold days of driving through northern Wisconsin and the UP, we are home!
 

Claire and Grandma Sue decorated to welcome Eliza home.  It was so good to see them and it feels good to have Eliza settled in.  Now for the next several days she’ll be resting on the couch or in bed so her foot can stay elevated to help with the swelling.  In general, Eliza is doing pretty well.

Over the past week, Claire sent around cards to Eliza’s friends at school, church and choir and they sent her get well messages.  Now she has a whole wall of fun messages to read over the next few days.  Thanks to everyone for all the love and support!

Leaving the Hospital

Onto the next phase of recovery!  This afternoon Eliza was discharged from the hospital.  The trip back to the hotel (and the drugs :)) wore her out.  She’s still dealing with swelling and pain, sometimes severe, but we hope for the best this evening and if everything goes alright, we will start to head back to Traverse City in the morning. 

A Good Day

What a huge difference this afternoon!  Pain is under good control now and that, combined with a couple of days of recovery and regaining strength, have made all the difference.  It was a busy day.

Dr. Novacheck, the orthopedic surgeon, visited a couple of times and he is pleased with Eliza’s progress.  We are so grateful to him and the other staff at Gillette for all their care and compassion this week.  Hopefully she will be discharged in the morning.

PT worked with Eliza to get in and out of her wheelchair safely and to be able to go up and down a few stairs since she will need that skill to get into and out of our house.  She picked everything up quickly and should be in good shape for getting around while she is still non weight bearing for the next few weeks.

Each evening volunteers host activities and tonight was the first night Eliza felt up to participating.  Some of the players from the University of Minnesota Lacrosse Team were working with the patients and their families to make art with fall leaves.  After such a full day, Eliza is worn out and sleeping soundly.  She is more of her friendly, chatty self than she has been all week.  What a blessing!

Turning a Corner, Slowly

This morning began with having a hard cast put on Eliza’s leg.  This was a very painful process because her leg was moved around quite a bit, the incisions had to be cleaned, and then her foot held tight at a 90o angle to her leg while the cast was set.  She now has a lovely purple cast and the stability should help overall with her recovery.  The plan was to take away the iv pain medication today, start PT, and take x-rays but after the casting process there was still a lot of pain and she was worn out, so now all of that is added to tomorrow's agenda.


After a long nap and recovery time, the nurses got Eliza into a wheelchair and we took a walk around the floor.  Eliza said that it felt really good to get out of her bed for awhile and have a change of scenery.  In the second picture you can see the Minnesota State Capital.


Frequently there are therapy dogs on the floor visiting the patient rooms.  Tonight two different dogs and their owners came in to see Eliza.  That was definitely another highlight of the day.  Over all she is doing much better and we see that she is stronger each day.  It was a big surgery on Monday and there is a lot of healing that has to happen.  That’s what we have to remind ourselves when there are set backs. This afternoon when her leg was especially sore and I was lamenting how sorry I was for the pain, Eliza said, “Mom, they cut my bone and put it back together with screws and a plate.  It’s going to be sore!"  She understands better than any of us and those are the facts.

Some Inspiration this Morning

Here are the cards Claire sent Eliza for yesterday and today.  The yellow card may be hard to read, it says “Don’t confuse your path with your destination.  Just because its stormy now doesn’t mean that you aren’t headed for SUNSHINE…”
These are a fun way to start the day off while Eliza’s in the hospital and she now looks forward to one with breakfast.  For each day, Claire wrote a theme, which includes:
So got this Sunday, You made it Monday, No tears Tuesday, We all love you Wednesday, and Get through it Thursday.
It’s rainy and cold here in St Paul today.  Where ever you are today and whatever you are facing, remember it’s ‘get through it Thursday’ and to 'Keep your face always toward the sunshine and the shadows will fall behind you’.  :)
Thanks Claire, love you.

The Good and the Not as Good

We’ll start with the not as good, so to end on a positive note.  Pain management is proving to be a challenge, though she had some time this afternoon with lower pain.  We hope this new combination of medication will get her through these rough few days so she’ll be ready for the hard work of moving with crutches and into a wheel chair.  One goal was for her to get out of bed and into a chair for the first time since surgery today and that didn’t happen.  Hopefully tomorrow.  She’s also had a low fever all day which doesn’t feel very good.  All of this can be normal for orthopedic surgery to the extent that she had, we are told.  The doctors still believe that she is on the right path and they are still planning on her being discharged later this week.  The day really wasn’t all bad though.  On the positive side, she is eating again without any trouble.  She enjoyed a couple of movies, a visit from a therapy dog, and a 'partial’ mani-pedi, minus the sore foot and the finger with the pulse oximeter. We are all enjoying the beautiful flowers that came this evening from Grandma Sue, Aunt Aimee, Uncle Doug, Grandma Betty, Papa Ernie, and Claire.  She loves the snap chats, texts and emails from her friends.  That really brightens her mood.  Tomorrow is a new day.

Inspiration from Claire

 
Here are the first three days worth of inspirational cards that Claire made for Eliza, starting with the day before surgery.  A good verse shared in yesterday’s card:
For God has not given us a spirit of fear and timidity, but of power, love and self discipline.  2 Timothy 1:7.
And another from Isaiah, shared in a text from Pastor Chris:
Those who wait on the Lord will renew their strength.  They will walk and not faint.  They will run and not be weary. 

A Straighter Foot and Leg

Under this big dressing is a leg that is no longer twisted from the knee down and a foot in better alignment.  From the surgeon’s report, everything went really well and they were happy with the outcome of the ‘osteotomies’.  The surgery she had today included a tibial derotation osteotomy, a calcaneal lengthening, and a medial cuneiform osteotomy.  That basically means that they cut and turned her tibia to correct an abnormal twist, and realigned bones in her foot, creating a better arch and correcting a forefoot deformity.  Though there are still orthopedic concerns, we hope that this surgery will take care of the biggest problem she was dealing with over the past couple of years, severe foot pain.  Eliza perked up for a little while this evening and enjoyed visits with mom and dad and her grandparents.  After surgery pain control has been a challenge, but the fact that she is sleeping soundly right now must mean things are going better.  Thank you for the love, prayers, texts and calls, they really did make a difficult day more bearable.

Surgery Day

We feel all the love and prayers.  Eliza is calm and ready for what is ahead.  Thanks for all the support.  Our family and friends are the best!

Sisters

It was hard to say good bye to Claire, but she sent along great inspirational cards for everyday Eliza is in the hospital and then some.  I will share then with you too along the way, because I think they are great and uplifting for all of us. Shh… don’t tell Eliza yet :).   Love you Claire!

Nearly Ready

We had a beautiful drive across the UP yesterday.  The afternoon and evening were sunny and the fall colors are just beginning.  Here is a picture Eliza took of the sun setting over Lake Michigan along Highway 2 near Manistique.  Soon we’ll be on our way to St. Paul.  Surgery is scheduled for tomorrow at noon.

The Gait Analysis

Here is a picture of the gait analysis at Gillette Children’s Hospital in St. Paul.  It was an interesting process.  These reflectors were used with a high speed camera to help learn about how Eliza moves and where the problems are coming from.

Finding a solution

Eliza loves piano, singing, flute, cooking, reading and spending time with her friends and family.  In the spring of 2013, the onset of severe pain in her left foot started to really impact her ability to participate in normal activities.  Though she had dealt with pain in her feet for many years, this was more severe than before and made mobility a challenge.  After seeing a few different doctors, we decided to seek another opinion at Gillette Children’s Hospital in St. Paul, Minnesota.  There she had a gait analysis to help the surgeon have a better picture of what was causing the pain.  We learned that ligament laxity, or hypermobility syndrome, has caused skeletal abnormalities in her legs and feet as she grew.  These abnormalities cause gait problems and led to the pain.  Because the pain is most severe on the left side, and that is where the biggest mal-alignments are, surgery on her left leg and foot was recommended to correct some of the problems.  We trust and hope that after a few months of recovery, this will bring healing and the ability to have mobility without pain. Because so many people from all over the country care about Eliza we decided to share her story here.