Saturday, July 19, 2014

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!

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: to place your order.

All the best,

Tuesday, July 15, 2014

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!

Wednesday, July 9, 2014

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.

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!

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!

Monday, July 7, 2014

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.

Saturday, July 5, 2014

Happy Fourth of July

A replica of the War of 1812 Battle of Baltimore flag at Fort McHenry.  Note the 15 stars and stripes.
Our Fourth of July was fabulous!  The cherry on top was having all of us be together and Henry felt great.  :)  We started with touring Fort McHenry, birthplace of the Star Spangled Banner.

Happy Fourth of July!

The fife and drum corps.

A mid-afternoon stop at the Summer Shack for a Spiderman snowball.
Later, we had one of those "stories to tell" moments as we hoped to see fireworks.  Given that we didn't want to get stuck in a crowd with Henry still so soon post-op and in a wheelchair, we ventured north to watch another local firework show in Oregon Ridge Park.  We were informed that we could see the fireworks from the Wegman's parking lot in Hunt Valley.  OK, we were ready.

Ready with our sense of humor! 
Ready with Pinterest inspired shirts, face tattoos, flags, glow bracelets, glow in the dark balloons, and bubbles.
The fireworks were to start at 9:30, and by 10:00 we were tired and done waiting.  We drove back to the highway and found a crowd of cars and people parked along the road.  So we pulled over to wait, thinking it couldn't be long.  Sure enough, at ten after the show finally began.  However, our view was seriously hindered by a few large trees.  It was late, the boys were half asleep, and our view terrible, so we headed home for the night.  A bit of a bust on the fireworks front, but still a great Fourth.

Family and Getting Out

Wednesday did not go at all how I thought it might go, but turned out to be a wonderful day.  The men in my life, led by my husband, conspired to get me out and away from Henry.  Woah! I was not sure I was ready for that.  Garrick had flown back to Cincy on Tuesday in order to bring Henry's brothers out to Baltimore, so it was just Henry and me to separate.  Were Grandma and Grandpa really ready and able to help Henry?

I think they are the goofiest of Henry's relatives.  :)  So good to have them visit!
My older brother, Ron, and his family were back in Baltimore for the day.  The plan was for them to take me to lunch while the grandparents took the kids to McDonald's.  So, we took Henry out to the car and figured out that he can sit in the car in his booster seat with the seat reclined.  Yes!  So, lunch went as planned.  I joined Ron, Jen, and Grant at a delicious place called Season's, which serves large plates for reasonable prices, and is delicious!  I was happy to share some of the crab cake. I think I like Maryland crab cakes. ;)

Meanwhile, Grandma and Grandpa had Henry and Emma at McDonald's.  They even got out of the car and ate in the restaurant to Henry's great joy.  Grandpa even survived a trip to the bathroom.  Thankfully, they sent me multiple pictures to keep me calm.

After lunch, we played a couple of intense rounds of Uno.
I am so thankful that our family has been there to support us, to entertain us, to make sure all of us are okay during this journey.  We are so blessed that our family loves Henry and us enough to plan their own vacations around visiting Henry.

We even got out for dinner with Grandma and Grandpa.  Though, this time I was with Henry. After dinner, we said, "See ya later," to Grandma and Grandpa as they headed back to Cincy in the a.m.

On Thursday, Henry slept until 11 a.m.  Poor kid was tired after all our adventures.  We had a quiet day of cleaning while we waited for the rest of the Horton boys to arrive.  It was so good to see our 3 boys together again, to see my other 2 boys.  Henry was so excited to have them here.  Thank you, Daddy, for making the long drive.

The Hortons together again!

We are all going to get good at Ping Pong thanks to the HP House.

Tuesday, July 1, 2014

A Quiet Tuesday

Today, we had a quiet day.  It was in the 90's outside, so it was a great day to stay in.  I tried giving Henry a smaller dose of the pain meds, but you could tell he wasn't feeling well.  He was significantly more upbeat and happy back on the higher dose.  He wasn't ready, and that is alright.  I will give him a few more days before I try again.  I have been relieved that Henry hasn't seemed to need the Valium overnight.  I will continue to see if he needs it after we wean more seriously from the pain medication.

Today Henry beat his Grandpa B in a serious game of ping pong, showed off his winning smile, watched the USA lose against Belgium (the family from Belgium found a Belgium bar to watch the game instead of staying at the House), met another young woman who had rotationplasty 6 years ago(it is such a cool thing to be here and connect with families who have similar experiences), and painted his little heart out.

Love this picture!  I also love that Grandma Cheri is in the background, again. LOL
Henry also began to work on using a walker.  It will be so cool to see him be more independent once he is go on that!

Grandma Cheri and I were busy making velcro underwear that Henry can wear over his Spica cast. Hehehe, our handstitching is quite impressive.

Ready to rest up for some more fun tomorrow.

Still a Little Boy

On Monday, we started with a visit with Dr. Standard's PA to make sure we had settle well after being discharged.  Chris shared how impressed he was with how well Henry was handling everything.  We agree, Henry is amazing. Per his suggestion, we began giving Henry pain meds less frequently.  He didn't complain all day.  Super hero powers in full force!

In the afternoon, the exhaustion of the last week caught up with me.  I felt like I could breathe again for the first time since I could see Henry doing so well.

After a cat nap, we walked to the playground at the retirement village next door, and played with our cousins.  And I mean played!  Henry went down the slides with a little help and played in a tunnel.  It made a huge difference for him to try standing on his right leg during play when previously he wouldn't even try due to fear.  It was another beautiful afternoon.

Around dinner, Henry had a few more visitors.  Henry's Uncle Ron, Aunt Jen, and cousins stopped by.  We will hang with them more Wed.

Exhausted, Henry fell asleep for the night at 7.  I can't wait to see what adventures await today!

Back to the HP House

Our weekend was eventful.  Saturday morning Henry woke up in a great mood, which followed his loopiness from the night before.  He proved to be great entertainment for us and his wonderful nurses.  By noon, things changed.  Henry was afraid to go #2, and his stomach became hard and distended.  He did not feel well.  :(

Even the removal of his epidural (Yeah!), and the other lines he needed with it, Henry was not going.  Later afternoon, Dr. Standard's partner Dr. Herzenberg came in and cut Henry's cast even lower at the belly.  The red marks made from the cast showed how badly he needed that.  Luckily, Henry thinks the cast cutting tickles.

In the evening, with a little medicinal help, Henry finally went.  Poor thing was so scared.  But you could see he was feeling better for it.

It was around then that we got some more special visitors.  Henry's Uncle Matt, Aunt Cathy, and cousins came.  Henry was happy to see them.

We were still trying to figure out the oral meds, but Henry slept like a rock until 4 a.m. when it took a little while for the meds to kick in.  So, Henry and I enjoyed watching Frozen.  "Let it go, let it go!"

We had a quiet morning, and it was clear Henry was ready to be discharged.  After a game of basketball in the playroom and lunch, we headed across the street to our home away from home.  I think Henry misses the bed with buttons to sit up and down.

It was a gorgeous day, so it was nice to get outside.  Henry enjoyed giving the tour of the HP House to his cousins.  We ate pizza on the patio and then got ready to sleep in an actual bed (huge relief for Mom and Dad, lol).

We love the tray that Grandma Cheri and Grandpa B found.  It was just right for Henry to use in the reclined position imposed by his cast.  Henry loves that it is red!