Monday, December 1, 2014

Back to Baltimore

You would never guess by the thermometer in our car around 3 pm, but today is the first day of December and snow is in the forecast tomorrow.  Actually, I heard there was some snow and freezing rain back home.  It was a good day to be in Baltimore.
Do you see that 70?  Your eyes are not broken.

"Are we there, yet?"
Driving across the Appalachian Mountains to return to Baltimore. 
Garrick, Henry and myself joined the going-back-home-from-Thanksgiving traffic Sunday, and despite sitting in DC traffic for a period, made it to our home-away-from-home in 9 hours.  This trip is our previously scheduled follow-up with Dr. Standard.

We came prepared with measurements and notes from physical therapy on Friday.  We also came with my usual list of questions.  I also came with some nerves.  Henry's ankle pronates more than I expected, and I was worried that it was a sign of a problem.

So, after reuniting with the ping pong table and Ms. Amy, we headed over to the RUBIN Institute.

Dr. Standard was thrilled with how well Henry is doing.  He said that Henry is ahead of the curve.  (Insert HUGE Mommy smiling face!)  He loved Henry's new Spiderman prosthetic and was impressed with how Henry walks on his own and with one crutch.  Henry has the full range of motion he would expect, a product of Henry's hard work in PT and at home.

We discussed what the x-rays show, that his hip is healing well.  There is a little extra space, but it is still within normal range.  The ankle looks good on x-ray.  In regards to my concern and the hip, they are both wait and see.  As Henry gets stronger and walks more without any crutches, if there is a problem there will be symptoms in his gait and signs of pain.  For now, though, all looks great!

We got the green light to start training Henry to use his ankle as a knee when he walks and on steps.  PT is about to get a lot more fun!

A short 3 hours after our arrival, we left armed with a plan, things to look for and do in case of a problem, and good news.  Baring any problems, we will return in 6 months.  We headed to Henry's favorite Subway for a late lunch, then enjoyed some free holiday fun in Baltimore. All in all, it was a great day in Baltimore. :)
First stop was Inner Harbor where it turned out there was a mini-Christkindlmarkt.  It really felt like Christmas after that!

My cute little elves.  hehehe
Inner Harbor selfie.

Next we headed to The Shops at Kenilworth for a fun holiday train display and a wave at Santa.
We even found Spiderman on the scene.  Here Henry is in front of Fort McHenry.
After dinner we headed to Baltimore's Miracle on 34th Street.  We managed to walk the sidewalks practically alone during a brief break in the rain - our own Baltimore Christmas miracle.

In the words of Garrick - Unreal.

Wednesday, November 5, 2014

Baby Steps

Watching Henry learn to walk again has had me reflecting on when Henry first learned to walk.  I wanted to share his story...

I have had the privilege to watch 3 little baby boys get up on their feet and take off in the world.

I will never forget my oldest.  He was 13 months, and I was home for the summer.  One July afternoon he finally took off across the morning room.  I remember my excitement and how anxiously I tried to catch it all on video.  I remember calling my mom to tell her all about it.

It was just as cool with my youngest.  He, too, was 13 months old.  It was a May afternoon after he had tubes put in his ears that morning.  He had taken a few steps here and there, but that day he took off across the living room.  I remember calling my dad to tell him about our day of firsts.

With Henry it was different.  At 10 months, we came home with Henry's first prosthetic, his lucky leg since it was St. Patrick's Day. His PT began to focus on helping Henry learn how to use it.

Bringing home Henry's first lucky leg. :)
Over the next 8 months, baby steps took on a new meaning.  With Henry, we witnessed the many little skills each baby needs to take those baby steps.  BABY STEPS to get to BABY STEPS.

Climbing on tables was our little monkey.
First there was walking around furniture.  Then between pieces of furniture.  And did you see when he learned to turn around and reach the other table? Then there were steps while holding hands, and then railings, and then with a walker.  Then Henry learned to take steps while pushing toys.  Each step took weeks.  Each step was celebrated in its own right.  Each baby step just as exciting as the one before.

Toy to couch. Couch to toy. Toy to couch.
Up, up.  Look, ma, look what I can do!

Future fire fighter.  Already our hero.
Too cute!  How has he grown up so much already?
First with the walker.

Even learning to stand took practice and time.  You could never keep Henry down.  He just never gave up.

More climbing.
Showing off his standing skills while his leg was being adjusted.
Then there was the independent steps.  Backwards then sideways.  Wait, we didn't practice backwards?  Why wouldn't he just walk forward?  I can never forget the tears he shed during PT as he walked, safely strapped and supported by his PT, on a treadmill.  The movie, Cars I believe, did nothing to distract him.

                                                   Walking backwards... we kept trying.

Just giving me that smile when I was trying to get him to walk.
                                           He didn't like it, but he did it.  What a trooper!

                                                   Sideways walking!  Love this kid!

We tried tricking him to walk by getting him to grab things that we would drop as he held.  Got 1 step here, another 1 there.  Did you see him take 2 teeny tiny baby steps when I dropped him off at the babysitter? And later in the kitchen?  Then we had him walking while using one hand to push the ball popper toy.

So when the fall day came that Henry, 18 months old, finally let go and independently took more than a step across the room, the joy in our house was palpable.  I got a video as we made him do it over and over again.  We clapped, and I screeched.  I sent my sister a text with a video.  It was Nov. 16, 2010.

           Me: "Here he goes! I cannot figure out how to put this on FB, so I will have to play with it.  I had to share in the meantime."
           Kelly: "Ah!!!!!!!!!!!!!! Omg!!!!! Go Henry go!!!!!!!!!!!!!!!!!!"

You see, with each of my other 2 boys I hadn't noticed all of the other steps.  I noted when they first pulled themselves up, that first tiny step, and then suddenly they were off.  With Henry, there were so many more steps and firsts.

Not once had I doubted that Henry would walk with his brothers, but until he did it still seemed too big to be true.  Each baby step carried with it so much hope, so much to celebrate.  Now Henry is unstoppable. :)

Working on steps and improving his posture after he started walking.


I am a planner.  Those that know me are nodding their heads right now.  So, as we prepared for this journey I tried to expect and plan for all sorts of possibilities.  Mostly, though, I hoped for and planned for best case scenario.

I hoped to see Henry trick-or-treating on his own steam.  That was the plan, that Henry would be far enough in his PT and have his prosthetic to be able to walk from house to house and collect candy.

Thus, Halloween was truly joyful as we walked outside in our family themed costumes and the boys each ran to the neighbor's houses.  Henry did have trouble holding his trick-or-treat basket with his crutches, so I followed behind him up each driveway so he could put his candy in.  Henry made it about 45 minutes before he slowed down and got into the wagon I had been dragging around. I couldn't be more proud or grateful.

Can you guess our theme?  Is Henry not the best Luke Skywalker you have ever seen? And the cutest!

It was truly a family adventure.
Henry making strides (literally) today at PT.  He is working on building strength and agility with his new Spiderman prosthetic.

Tuesday, October 21, 2014

Happy Leg Day

This day has been days, weeks, and months in the making.  It started when we made the decision to do rotationplasty last year.  It started again when we arrived in Baltimore in June for the surgery itself.  It started again in August when the cast came off and we walked out of the office with PT and prosthesis scripts in hands.


Today Henry came home with a prosthetic leg and walked, albeit ungracefully, across our living room.  HENRY WALKED ON TWO LEGS after not doing so for 4 months!

Thinking about this day since we scheduled the appointment has brought tears to my eyes.  This felt forever away, and here it is.  Even more joyful, Henry has done so well, been so strong and healthy, has proven that healing is one of his super powers, and maintained his ever-present smile (another of his super powers).  My tears come from a place of joy and gratitude and praise to God for all the blessings and miracles in this journey.

Now, we have a leg, unofficially.  This week is our test drive.  Since this is all so new for Henry, we are being given the opportunity to try the "finished" leg to check for any issues, small or large.  Next week, Henry will go back, and if all goes well we will officially receive the leg then.

Yesterday, Henry told me he didn't want to get the leg.  He has gotten fast on his crutches, and I think he might have been worried about it hurting.  I had to assure him that he could still use his crutches at school for a few days.  We will stick with this plan, but there is nothing like walking on a leg to bring out Henry's joy in having it.  He loved celebrating his new leg and showing it off.
Celebrating and showing off his leg!

His leg is beautiful!  It has the perfect placement of Spiderman, has an easy-to-use handle to bend the leg for sitting and eventual kneeling, has air flow for a sweaty foot, and we love it.  A huge thanks to Rob Pinkston, Patty Biltz, and Murphy the dog at Superior Prosthetic Solutions.

What pride and joy!

Look how it bends while he sits in the car!

Henry and Murphy hanging out and playing soccer while his leg was being adjusted.
We have been very busy leading up to this day, so below is an update of what has transpired since our last post.

For the last 5 weeks, Henry has been working on Physical Therapy twice a week with a fabulous therapist at Children's. Add the two times a day Henry worked to stretch and strengthen his leg, and Henry has been busy.  Henry has had his usual positive attitude, showing off how high he can kick and enjoying all the attention.  He truly is inspiring.

One of Henry's first PT appointments working on stretching his ankle.
And he has made the most amazing improvements!

In the nearly 4 weeks between cast removal and starting PT, Henry had gained about the 90 degree motion at his hip that we want at minimum. In that same time we did not make as much progress at his ankle.  It seemed locked and barely moved.  Around the same time Henry started PT he became significantly more comfortable and active, and his ankle began to feel a little more loose.  However, it still barely moved.  With some great exercises orchestrated by Ms. Katie, his PT, Henry has gained significant range of motion at his ankle, more each day.

All the while, Henry has been a kindergartener, doing all the things little boys do.  When we say that Henry has not let this journey slow him down, we might be understating it.  He has gotten in trouble at school for "walking" too fast with his walker and crutches.  Oh, my!  In fact, between his speedy walking, running the uneven surface of grass and playgrounds, Henry's walker underwent nearly daily repairs.  Last month, we pulled out his crutches, adjusted the height, and in no time he was off again on those.  Boy, can he fly!
Just doing what all 5 year-olds do in October.

He is working on adding motion at both joints and strengthening his leg with weights.  Now that we have his leg, we will also work on balance and proper gait.

I had hoped to have Henry walk for himself by Halloween in time for trick-or-treating.  I don't know if Henry will get very far next week, but I am so excited that he will walk down our sidewalk again on his own.  Happy leg day!

Casting day!  A beginning step to making a prosthetic.

Checking out the socket for fit and feel.

An early leg prototype.
Adjustments, adjustments, adjustments.

Look at that face!  What determination!

Another socket check.  Gotta try it out to know.

Tuesday, September 16, 2014

While We Wait...

It has been a busy couple of weeks.  :)

Showing off what he can do after 4 days post cast removal!
Henry has started kindergarten!  Garrick and Henry shared a PowerPoint about Henry with his class.  We highlighted how Henry can do all the things his friends can (swim, play baseball, build snow angels), but that his leg is different.  They also shared his last prosthetic leg so his classmates could ask questions.  Not surprising, there were a few curious kids, but all of them were accepting of Henry.  We have a great school, with an amazingly supportive teacher, administration, and support staff who were ready for all that Henry needs and may need.

One of the coolest parts of having Henry at the same school as big brother Ben is that they have recess together.  Ben has shared all about all that Henry is doing on the playground.   I also asked if Ben's friends asked about Henry's leg.  Ben said that a few boys wanted to know why Henry's leg was shorter.  Ben said he just explained that he was born with a shorter leg.  Ben added that they didn't ask about his foot being backward, so Ben explained about the surgery.  It was all matter of fact.  I am so grateful that Henry and his brothers are so comfortable with Henry's shorter leg and all the changes related to the surgery.  Who cares if it is backward?

Henry was wearing his turtle shell less and less very quickly.  The last time Henry wore it at all was one week post cast removal.  That Thursday after he took it off to meet with his prosthetist, he kept it off, even when he went to bed.  So, he decided the next morning that he didn't need it anymore.  That was that.

First day of Kindergarten!!!!
 He may not always like it when we touch his leg, but it hasn't stopped him from having fun.  We found Henry one night riding a skateboard down the hill in front of our house.  Umm, Henry, how are you going to stop!?!  He has played football with his brothers.  He is climbing the climbing wall and is all over the playground.  He is even hopping around our house more than using his walker.

Henry is making great progress, despite not yet starting physical therapy.  He understands the need for regular exercises for his leg.  Three times a day we stretch and practice using his leg muscles to lift his leg.  I can't wait to see how much more he can do once we get physical therapy set-up.

Henry's attitude about all of it continues to inspire us.  Being his mom continues to teach me so much about living and loving and acceptance.

We will update more as we have more appointments to help Henry become fully functioning with his "new" little leg.

Frontyard football!

A Spiderman adventure...

Saturday, August 23, 2014


Get him in the pool.

Those were one of the directions from Dr. Standard the other day.  In the pool Henry would more comfortably kick his leg, providing a natural physical therapy.  In fact, had we stayed in Baltimore for his 12 weeks of physical therapy, pool therapy would be a part of it.

So, we were all excited to go swimming (It was 88, and we spent 2 hours in the sun playing/watching soccer this morning.).  Henry most of all!  He had not been so sure of the bathtub, being even more afraid of slipping.  But the pool?  Henry couldn't wait to get his suit on.

Henry was happy to sit with Grandpa, squirt all of us, and work on kicking his legs.  It didn't take long, and he was swimming around in an inner tube and balancing himself in the shallow end.  In the end, he was so comfortable that he walked away without his turtle shell, even sat in the car.  Sitting is also a stretching exercise, bending his new hip in a way that it hasn't yet.

Henry and Grandpa Go-Go getting comfortable in the water.

Henry's brothers are there for him and with him every step of the way.

Walking without his turtle shell.  It was slow, small steps at first, but he was soon racing to the car.

Sitting tall, sitting proud.

I would have more pictures from the pool, but I was too busy enjoying the water with all of my boys.

Thursday, August 21, 2014

Cast Removal Day! - August 21, 2014

Hello from our "home away from home" - The Hackerman Patz House at Sinai Hospital.

A video message from Henry (& Garrick) from the RIAO this morning:

Today was our scheduled post surgery follow-up with Dr. Shawn Standard and his team at RIAO. Today's appointment ran nearly 5 hours including x-ray.


The first stop was into the casting room to get the spica cast cut off!  PA Chris Fisher fired up the torch and machette....just kidding.

Henry troopered through the cast saw noise and vibration. Within about 15 minutes the cast was cut in half.  Each half was later fabricated to become a turtle shell brace with use of padding and Velcro.  I'll get a picture of this posted in a later edition. The purpose of the brace is to keep Henry's leg protected until he has more function/movement in the leg. The turtle shell design makes it easier to remove as he gets ready to start physical therapy and prosthesis fitting.  Over the next several weeks, Henry will become more comfortable with his leg movement and will be wearing the brace less.

Physician Assistant Chris Fisher making the cuts to Henry's spica cast.

Post Cast Removal:
Below is the image of the latest x-ray.  The spica cast did it's job to keep the leg and new joints in the proper position.  You can see some of the "hardware" that will now likely make TSA agents a little curious next time we fly.

The following image shows Henry's "lucky" aka "little" leg and incisions.  Should you not wish to see it please scroll past the image.

Several things to note when looking at the image:
1. His lucky leg (left) compared to his non-affected leg.  The left leg has been proportional to the right leg's knee since birth.
2. The incision at the ankle has a similar incision on the opposite side of his ankle.  This was the first procedure completed during the marathon surgery in June.  It was where it was determined that Henry was missing a bone in his ankle. It was also where there were several scews and two external cables were placed to prevent the ankle from moving sideways.  The cables were removed during the initial cast replacement.
3. The upper incisions are where the rotation and fusing of the pelvis took place.  The round (under hip) incision is 360*.
4. With the rotation, the next prosthetic will fit over the foot and up the leg to the new hip joint. The revised ankle is now the knee joint.

Henry without the cast, playing with his TMNT waiting for a visit from Dr. Standard

Dr. Standard came in to see how the super hero was doing. We got the "all clear" and that Henry was right on track.  We received the physical therapy script and order for x-rays to be completed in Cincinnati in 6-8 weeks.  Our next scheduled trip back to Baltimore will be in early December for continued follow-up/x-ray.

What's Next?
1. Physical therapy 3x per week for the next 12 weeks!  We are hoping to start this coming week.
2. Prosthetic creation/socket checks and new leg.  Our first appointment is next week.
3. Enjoy being a kindergartner! 

Zoo Visit
Since all 5 of us were here for this trip, we made a brief trek to the Maryland Zoo and checked out some of our relatives....I mean animals.  It was great to see that a lot of the animals were actually moving about, whereas in our July visit most were trying to stay cool and finding shade.  The cheetah was pacing, a giraffe was trotting and Logan was climbing fences trying to feed a gazelle.

Our three animal trainers!

Homeward Bound
In the words of Paul Simon, we'll be heading back to Cincy on Friday morning in preparations for the first Fall soccer games for Ben and Logan (& Coach Stacy).  We've had a unique "Summer in Baltimore" adventure, meeting wonderful families at the HP House, reconnecting with the awesome staff at Sinai and RIAO.  Most importantly thank you to all who have followed Henry's journey through this blog, Facebook posts, and word of mouth.  The prayers, well wishes and donations made this adventure for us unbelievable.  Prayer holds an important place in our life and will continue to do so for an eternity.  It is not without prayer that Henry is healthy, infection free and is exceeding expectations.  

Continue following this blog for updates about physical therapy and the latest prosthesis.

In Christ's Peace,