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.

Buzzzzzzzz

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,

Garrick

The Summer of the Spica Cast

It is crazy how quickly the past 6 weeks have flown.  It has been a truly enjoyable summer, spica cast and all.  In true Henry fashion, it hasn't slowed him down or kept him from doing anything he wanted.  Luckily, it was a mild summer, often with highs barely up to 80 degrees, so there hasn't been as much swimming and water play.  This meant Henry rarely had to do something different than his brothers.  It also kept his cast from itching as much.  ;)

As we prepare to meet again with Henry's doctor to get the cast "off", we thought we would share some of Henry's summer highlights.

Annual PFFD Picnic
We were so excited that we were home from Baltimore in plenty of time to join and enjoy the annual local PFFD and Limb Deficiency picnic.  This year, like last, the picnic was at a park only about 15 minutes from our home.  It was such a beautiful afternoon, and it was so wonderful to connect again with families who share the PFFD story.  It was also great to meet some more families.

We learned a new game from Sweden, discussed specialists at Children's and around the country, shared a delicious meal, splashed in the splash pad, sat on a fire truck, climbed the playground, and had a ton of fun.  Our whole family looks forward to this day each summer.  Thank you Joann and all of her helpers for organizing a fabulous event.  Thanks also to the Loveland Fire Dept. for bringing their trucks over and treating each of our kids like stars.

And he can dance!
Henry didn't just sit around, he danced!  I love this moment caught on tape dancing to Michael Jackson.  My favorite part is the moves at the end.  Note how the way his cast is keeps his leg straight up.

Dancing, spica cast style!

Riding bikes and cars and throwing balls
One of our favorite things to do on a nice day is to go out front and ride bikes with all of the neighborhood kids.  They also play ball.  Henry joined right in.  He figured out how to sit so he could drive his brother's little powered Nascar 88 car, sat uncomfortably on a tricycle I pushed around, and stood anchoring his short leg on his walker to throw the ball.

He loves playing with his brothers and his friends.  And he wouldn't miss out on any chance to play ball with his dad.

Henry is just one of the boys of summer.

Just Having Fun!
One of the best parts about Henry is that he enjoys and loves life.  If there is fun to be had, he doesn't let a little pain or a cast or a shorter leg or anything keep him from having fun.

We are grateful that Henry only needs Tylenol every couple of days for the pain.  He is ready to get that cast off and show his doctor just what he can do!

At a favorite local park.

We were so lucky to have Henry's Horton cousin come down to Cincy to hang with us.  We had an awesome time with him exploring COSI Science Museum in Columbus.

COSI has a climbing wall.  Henry wants to go back and conquer it after the cast comes off.

Back another day to Pine Hill Park.

We went down to Bengals Training Camp Family day.  Henry got to meet 4 players and get their autograph.  Who Dey!

Henry showing off his Super Hero cape.  He really is my hero and my inspiration.

Finally, we want to thank all of you again for keeping our family in your thoughts and prayers, for the many times you ask how Henry is doing, and for the different ways you have helped us along this journey.  This journey is not over, but we feel truly blessed by the community supporting us and how well Henry is doing physically, emotionally, and spiritually.  THANK YOU!

Thank You & Transitions

As we wrap up our first week back home, the routines are settling back into place. Brothers being brothers, grocery shopping, chores around the house, collecting mail and the list goes on...

As you know from previous posts, this surgery and trip have been in the works since March 2013.  It was not an easy decision to move forth and there was a lot of hesitation.  Through much prayer the decision became easier and we felt it to be the right call so that Henry can have a better standard of life.  Throughout the anticipation, planning and during a stressful, sleepless 3 weeks at Sinai it was our Henry that rose above and showed his strength, courage and praise.  Albeit it some discomfort at times and being in a "new" place he showed Stacy and I the character he is made of and how he will handle what comes his direction in the future.  As a parent, moreover, as a DAD, I am continuously impressed of how Henry has reacted to this entire surgery.  Don't get me wrong we've had the good and the bad.  We cut off his damn leg! He doesn't care, he just wants to be "Henry" and be like any 5 year old! He proved that in several situations: a.) by wanting to go down the slide one day after being released from the hospital! b.) standing (with assistance of his walker) to play ping pong at the HP house. 

Henry will go far.  My three sons will go far.  I don't know where they get their courage, enthusiasm, spirit and good nature.  I can't take the credit, this is all them.  I can surely learn something from them.

Thank You!
We owe a great deal of gratitude to many people!  Without leaving anyone out unintentionally I am going to name a few people.  The first people we met on this journey is the awesome people at the Hackerman-Patz House.  Bill Turner, house director and Amy Powder, administrative power house.  Without the HP House, we would be staying at the Ronald McDonald house 20 miles away or a hotel.  William Hackerman envisioned this home for families who needed "a home away from home."

The surgical team lead by Dr. Shawn Standard, his PAs Allison and Chris, Child Life Advocate Marilyn, Dr. Standard's OR assistant Harriet and support staff Lee and Ann.

The hospital staff and nurses.  We were blessed to have one-on-one attention with the PICU and PACU teams.  Paula, Barb, Yevette, Janie, Blaire and students Kevin and Greg.  They all kept Henry comfortable and assisted in the proper care.

The OT team lead by Lauren.  With their help we learned to pedal tape and properly handle the spica cast.  (I think the cast weighs more than Henry!)

To our families that made the 1,000+ mile trek by car and plane; to the many letters/cards/packages received in Baltimore; to the many people and companies that donated to "Henry's Heroes" to all the people that said a prayer:  Thank You!

Transitions
As we are currently in the recovery phase, we are preparing to transition to the rehabilitation phase.  As part of this phase, Henry will be returning to RIAO August 20th for cast removal.  He won't need to be placed under anesthesia for this removal. This next trip will be 2 nighter (drive Wednesday, clinic Thursday, drive home Friday).

As soon as we get home, school starts for Henry and Ben (both at the same school, Logan starts pre-school the week prior).  During that same week, Henry will have his first PT at Cincinnati Children's and start the design work of his new Spiderman prosthesis.  The next several months will be consumed by time, energy and gas to downtown Cincinnati and Baltimore.

In the Fall, date to be determined, we'll travel back out to Baltimore for follow-up appointments.  This trend will continue at the 6 month post-surgery mark and the 1 year post surgery mark.

Please keep the prayers coming as we continue on this journey!

Pictures and Video
Here are a few pictures of Henry as we were preparing to leave Baltimore and from home:

 "Ping Pong Henry" - From the moment we stepped foot in the HP House, Henry loved to hit as many balls as possible!

Even the puppy is in on checking out the mail for Henry.  Thanks uncle Garth for the cool Spiderman hat!

We had our own "All-Star" game in the backyard! The Reds, 
Orioles and Dragons were represented. 

Henry playing ping pong during our last full day at the HP house.

Stacy and I will continue to update the blog in the coming days and weeks.  We still have "Super Hero Henry" wristbands in stock.  Please call either one of us or email me at: garrick@garrickhorton.com to place your order.

All the best,
Garrick

New Cast and HOME!

On Friday, we made an early morning trek across the street to pre-op, again.  This time, though, it was technically not for any surgery.  Due to the length of time it takes to put on a new spica cast and the possibility of cleaning up any infection, Dr. Standard does a 2-week post-op cast change under anesthesia.

Getting ready for the OR.

This made Henry nervous, but we assured him that he should not be spending another night at the hospital, that it was just for a cast change so he didn't have to try to hold still.  I am not sure we had him convinced until he woke up.  His first words were something like, "Do we get to go to Subway now?"  Henry had discovered he loves Subway, and there happens to be one in the hospital.

Showing off his blue tongue from his blue post-op popsicle.

This procedure took only a little longer than an hour.  Dr. Standard came and talked with us before and after, doing his expected and usual job of explaining what he might do and why.  Luckily, there was no sign of infection.  Rah! Rah! Shishkabob! Go Henry!

In fact, everything looked really good.  Henry had a 70 degree bend at his hip, which is a good place to be at this point.  The ankle looked so good that they removed some of the hardware.

Original x-ray from surgery day of Henry's ankle.

Original x-ray of surgery day of Henry's hip and all his new hardware.

The new cast is as cool as the first, and they made it lower around his waist from the get go.

After the promised Subway lunch, Henry was feeling good and was on the move all over our room and the HP House.  He played ping pong standing, walked everywhere with his walker, and practiced climbing on and off the furniture.  His confidence and fearlessness was back, and he was doing it all.

On Saturday, we loaded up the Swagger Wagon, and headed back to Cincy.  We arrived back to a Welcome Home celebration with Henry's brothers and the Go-Go's.  It was so good to be back and together and well.

Henry showing off his own wheels.

Thank you all for the well wishes and prayers.


Now, we wait and heal and hang for the next few weeks.  We will return to Baltimore in August to have the cast removed.  The shell will be turned into a removable cast/brace that he will wear for about 4 weeks as he begins physical therapy and prosthetic fitting.  There will be at least 3 more visits to Baltimore after that in the next year.  We are ready!

Final Week in Baltimore!

Happy Wednesday from the HP House -
We wanted to give you a quick update on "Super Hero Henry" as we are into our final week here in Baltimore.

Progress!
Henry's recovery has been going well.  Stacy and I have been impressed with his continued improvement in spirit, strength and good humor.  Although, I think he has taken a liking to being a temporary "only child."

Each day, Henry's pain seems to be waning and we have been able to scale back the pain meds.  Hard to believe that two weeks ago, he was in the midst of an 11 hour surgery.  Henry is starting to be more confident with the use of his walker, albeit the spica cast gets in the way.

Weekend of Brothers and Go-Gos
Since the 4th of July, it has been a busy week.  I brought our other two sons to Baltimore last week (see previous posts).  They enjoyed seeing their mom and brother, as did Henry enjoy seeing his bros.

Picture from Thursday, July 3rd

On Saturday, Grandpa and Grandma Go-Go flew in from Cincy (via Dayton) to see Super Hero Henry.  We had a great dinner at Seasons and stayed in to play Spider-Man Uno.  It was a quick turnaround for Go-Go's as they headed back to Cincy with Ben and Logan on Sunday.  Grandpa got them back to "Camp Go-Go" in good timing.  

Grandpa & Grandma Go-Go!  Sunday, July 6th

Being away from our routines and "normal life" for nearly 3 weeks has been tough for everyone.  I am fortunate for my parents who have lovingly and unselfishly put their lives on hold to care for, entertain, feed and protect Ben and Logan.  Having already raised two boys, they have gotten to do it again for the short term.  "Camp Go-Go" has kept the boys busy with Lake Cumberland, Kings Island, multiple daily trips to the Hughes Woods pool, playing at Keehner Park, tennis at the gym, multiple trips to McD's and the Cone.  A sincere THANK YOU to mom and dad!

Animals
With a few days left before the anticipated re-casting and post-surgery follow-up, we had the chance to tour the Maryland Zoo and the National Aquarium thanks to the efforts of Greg Terry, LPN who made this happen.  Thanks also to Rosalyn Stewart with the National Aquarium.

On Deck...

Henry's next procedure is slated for Friday (time TBD).  This procedure will involve placing Henry under anesthesia so that Dr. Standard and his team can remove the initial casting, take current x-rays and pictures as well as check incisions.  The team will then put into place a new cast, hopefully just as cool as the first one!  If all goes as planned, we'll load up the swagger wagon and head west back to Cincy on Saturday.  Henry will be in the next cast for a minimum of 3 weeks and then we'll be back to Baltimore for that cast removal.  PT and fitting for the next prosthesis will take place after that. 

So, our journey continues.  Stacy and I can't say "Thank You" enough for all of the followers, donors, believers, card writers, and prayers who have joined this radical surgery and journey.

THANK YOU and God bless,

Garrick, Stacy, Henry & family.

A few extra pictures of all the fun:

On Saturday, our view overlooking Inner Harbor from Federal Hill.

Loved the chimpanzees!  One was resting just on the other side of the glass.

Henry and Daddy took a ride down the slide at the zoo. 

Henry at the Aquarium.  What a super cool place!

Prayers and Faith

This journey with Henry has been one of faith, testing my faith and growing my faith, teaching me about faith.  Garrick and I share a strong faith, developing and growing every day.  It is why it was so important for us to have so many friends and family wear the Henry's Heroes bracelets and praying for him and us on the day of his surgery.  I truly believe that having God with Henry, his doctors and nurses, and with us, made Henry's surgery a success.  Thank you all for the prayers.  It truly has meant the world to us, and touches our hearts.

So, yesterday, Sunday, with Henry doing so well, we ventured to mass at the Basilica of the National Shrine of the Assumption of the Blessed Virgin Mary.  It is a beautiful and historic cathedral, the first of the United States.  We were also impressed with the incredible music of the choir and organ.

What struck me among all the beauty was the Gospel.  It spoke to me.  It told me that it would all be okay, that Henry would be okay, that Jesus was with me.




Matthew 11: 25-30

At that time Jesus exclaimed: 
“I give praise to you, Father, Lord of heaven and earth,
for although you have hidden these things
from the wise and the learned
you have revealed them to little ones.
Yes, Father, such has been your gracious will.
All things have been handed over to me by my Father. 
No one knows the Son except the Father,
and no one knows the Father except the Son
and anyone to whom the Son wishes to reveal him.”

“Come to me, all you who labor and are burdened,
and I will give you rest.
Take my yoke upon you and learn from me,
for I am meek and humble of heart;
and you will find rest for yourselves. 
For my yoke is easy, and my burden light.”


First, Revered William Graham gave a wonderful homily, wherein he helped me understand what a yoke is, and how this Gospel can be compared to Mary Stevenson's poem "Footprints in the Sand."  

"The Lord replied, 
"The times when you have 
seen only one set of footprints, 
is when I carried you."

God is not giving me rest, such that I am retired and my burden is gone.  But, he lightens my burden, makes it easier to go on.  He has answered prayers, sat with me, been with Henry, given us all of you who have prayed and shared in our journey.  We are not alone, not in the physical nor spiritual sense.

The part I highlighted in blue also spoke to me.  For the day before Henry's surgery I had been reading in my Gospels in a Year e-mails from the Book of Matthew (I am a little behind):

Matthew 19: 13-15

13 Then children were brought to him that he might lay his hands on them and pray. The disciples rebuked the people; 14 but Jesus said, "Let the children come to me, and do not hinder them; for to such belongs the kingdom of heaven." 15 And he laid his hands on them and went away.

Matthew 18:10

10 "See that you do not despise one of these little ones; for I tell you that in heaven their angels always behold the face of my Father who is in heaven.

God has been speaking to me.  He wanted me to know that He was watching over Henry, and that Henry's angels, my Mom and sister among them, were making sure Henry was taken care of.  

You see, beyond a faith and belief in God and Jesus, I believe in the power of prayers and I believe in angels.  God knew what I needed to hear, to bring me peace, to strengthen my faith.

God was also telling me that should anything happen to Henry, that Henry had a place in Heaven.  This idea is hard to like, but it is hopeful and peaceful despite my fears.

God is good.  May the peace of the Lord be with you.