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.

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!

Friday Update | 2 Days Post Surgery

We are two days post-surgery, and we have been amazed by how well Henry is doing.  He has this amazing spirit, and even now it comes out.  Not to say it has all been roses, for we have definitely had some heart-wrenching moments.  However, our little boy has smiled amidst his pain and discomfort, and itchiness.  There is nothing like multiple pain meds that lead to itchiness.  Oy!

So, first, enjoy this video message from our Super Hero Henry:

It is a little weird to see our 5 year old so loopy, but it is good to see him not hurting and showing off his happy side. :)

Henry had three special visitors on Thursday, June 26th:
Jen and B were in town from OH to meet with Dr. Standard for a check-up.  B, 11, had rotationplasty surgery 7 years ago.  Stacy and Jen started talking several months back.  Hearing how well B is doing, and seeing pictures of all she has done after her own rotationplasty has offered hope and inspiration.  It has also hugely helped us know that Henry will still be able to do it all after he heals, with improvement.  Thank you so much for stopping by twice to offer support as we begin our rotationplasty journey!

Henry's uncle Garth flew in from the Windy City just to see his Godson for a few brief hours.  Henry was so happy to see a familiar face!  It didn't hurt that Garth brought a few special surprises.  Only 1 day post surgery, Henry was a bit more active and nestled into a wheel chair.  Thanks to my brother for flying out and spending a few brief hours with boots on the ground.

Thursday and Friday Happenings:

Henry cruising for nurses!

OT  has had us very busy the last couple of days.  They had Henry out of his bed by noon on day 1 post-op.  It was a quick trip in the wheelchair to the playroom, where Henry fell asleep.  Just getting in the chair was exhausting and a little scary the first time.  We have all done better getting in the chair and getting around.  Henry even asked to get back in later.  Our awesome OT helped us petal tape Henry's cast with the Spiderman duck tape we brought.  Thanks to Pinterest, she was impressed that we knew to bring some, and his cast is the coolest one ever.  We'll get a picture of it later.  Check out hipspicacast.blogspot.com and mykidseatoffthefloor.blogspot.com for some great tips on how to take care of a spica cast.  moltoscherzando.blogspot.com also has a great tutorial on how to make underwear that can be worn over the cast.  Our OT also helped us figure out how to get our already potty trained 5 year old to the bathroom while wearing his cast.  It won't always be easy, but we can do it.

Our first night was a little rocky and exhausting as we tried to figure out what was the best medicine combination to help him relax and be comfortable.  Last night was a huge improvement, with some solid chunks of sleep.  It helped to give him a little of everything: pain medicine through his epidural, valium for muscle spasms, and Benadryl for all the itching.  I must say a thank you for random kid friendly movies at 4 a.m.

So, here are a few other pictures of our journey as we get ready for bed, night 3.  Thank you all again for the prayers and well wishes.

Post Surgery | Thursday June 26th

As the sun rises over Sinai Hospital, a new day has dawn.  Good Thursday morning from Baltimore.

With a few winks of sleep, the 3 of us are in the PICU (pediatric intensive care unit) for the day before moving into the pediatric room.  Luckily all on the same floor of this 2 yr old children's hospital unit.

Surgery took around 11 hours yesterday!  Henry's adventure began before at 6:30a with rollback to the OR at 8:30a.  Stacy and I received consistent updates about every 90 min to 2 hrs.  We finally saw him in the PACU at 8:00p.  He was calling for his mom.

After about 90ish min,  we rolled through the "underbelly" of Sinai to get over to the children's hospital side.  The hallway/tunnel seemed to be endless!  As we arose through the elevators, the pediatric team escorted us to our current PICU room.

Overall, the surgery was a success.  Dr. Standard explained in detail how the surgery went.  Albeit, a very meticulous process from beginning to end.  Starting with the "super ankle" surgery to the final x-rays post-casting and everything in between.  Each anatomy is different from the next.  Dr. Standard carefully worked around the major arteries including having to shape what little femur Henry had away from the femoral artery.  There are several screws and cables inside of the Super Hero! Only to make him that much faster!

Henry has been in and out of sleepiness, while taking in ice chips and sips of water.  There is some discomfort as to be expected with all of the IV's, ports, and a epidural.  He realized late last night that he had a spica cast on and was upset that he couldn't just roll over in bed.  His green blanket is providing him comfort.  I am hoping to be able to give him one of his Spiderman guys that he normally sleeps with today once we get through some of the nausea.

His spica cast is Spiderman red with blue striped "webs" covers from about mid-belly, down to his right knee cap and his entire "magic or lucky" leg side with his toes sticking out.  Even with the epidural, he can feel us touching his toes and is able to wiggle them as well.

So we start day 1 post recovery!

Stacy and I are extremely grateful for Dr. Shawn Standard, his staff and the medical team from RIAO and Sinai Hospital.  Dr. Standard's head nurse, Harriet, provided updates to us directly from the OR.  Through her we felt the comfort she provided with the anticipated calls. Marilyn, life care specialist, was awesome with meeting us consistently throughout the day and providing a tour of this facility.  She stayed late to make sure we got to Henry as soon as we could.

Our thanks to Stacy's parents, Ron and Cheri, for making the trip to BWI to be with us during the surgery.  Many crossword puzzles were completed yesterday!

We can't forget that we have two other wonderful boys back in the 'Nati.  Grandpa and Grandma Go-Gos (Ron and Gayle) are spoiling Ben and Logan while we are here.  With the age of technology we have been able to Skype and talk with them all.  It's not easy being separated by multiple states and when the routine has been interrupted.  Thanks Go-Go's for taking good care of the boys!

Thanks for all of the text, DM, and FB messages that Stacy and I both received throughout  yesterday.

Most importantly, THANK YOU for the prayers!  It was through those prayers that Henry had a successful surgery!

I hear the music playing, so that is my que to end this "Oscar-ish" post.  Thanks again for following our journey!

**** 9:00 AM Update: Picture! ****

Godspeed,
-GH