National Zoo

(cue Jack's random photo face *smh)

On Thursday, Jeffrey, Jack, and I met up with the King family. Jersey friends of ours who transplanted to VA. We miss them terribly. 


Janack, the maiden name of my friend by which we still call her, was super sweet with Jeffrey by joking around with him. At one point she says, "Two is better than one". "If someone asks if you want one or two donuts? 2 donuts. If they ask one or two pizzas? 2 pizzas. One or two surgeries? 2 please!" haha It was great!








The day was pretty eventful. The snow cone stand ran out of snow cones, it was super sweaty hot, we saw a gorilla run with a plastic milk crate, elephants eating hay, pandas chewing on a Kong, seals sleeping while Jack barked at them, reptiles, mammals...etc
Kids and animals...it's a Win Win!

one or two ice creams? 2!!

Home for the Weekend

We were back to our old summer routines for a teaser weekend:
Video games, birthday party, Teen Titans movie, shark week...

With all the fun, comes some struggles as well. He's been lengthening for almost a month. Great bone growth, tough muscle tightening. His knee flexion is at about 68 degrees. It gets tight easily. Heat and bending often help. He's not a fan of car rides lately either. So Baltimore to home and back in traffic is dreaded.
Tomorrow is our next clinic visit with Dr. Standard's PA, Allison, at 1:00. We'll get new X-rays and discuss how things are going.

Independence Day

Woohoo! It's an Independence Day, indeed! Of course we did the parade thing, but the morning started with Jeffrey's personal independence. 
He woke up, and for the first time, got off the bed himself, used his walker, pulled down his pants to use the bathroom, all...by...himself! This all seems second nature to everyone else, but it was a huge milestone for us!

Here is our parade in Towson:

Jeffrey's first official car ride after this surgery

Waiting for the parade to start

Ashley & Christy, friends from the HP house

Uncle Sam?

Baltimore Oriole

I told Jeffrey to stop being so disrespectful and stand for the flag! hehe

P.S.: We had shower #2 for Jeffrey today...and...it was a success! Shower chair + understanding=success!

Normal?

      Jeffrey and I had a moment...well, we had quite a few moments during his hour and a half shower.
      Sunday, today, is the first day Jeffrey is permitted to shower post-surgery. He knew it was coming today but has been anxious about it being difficult and painful. It was on so many levels.
      Pulling off the tape was the most physically challenging and painful. However, a conversation that took place was mentally draining...on both of us.
      It all started with the question, "Why can't I just be 'normal'?" Wow! He went there. "You're normal, Jack's normal, Dad's normal...etc." It broke my heart to hear him say this because no one wants to hear their baby feel this way, but also because how dare you assume there even IS a normal.
      I replied after a few seconds of looking at the ceiling, trying to hold back the tears myself. Instead, I let them fall as he looked at me curiously. At this point, we are about 35 minutes into his shower. It was a struggle to get him in the shower, the brace off, and then rip off the bandages. We were already drained, then his comment.
So, I wanted to make this a teachable moment for him to try to be a little more humble. My wisdom to him was this...
"There is no NORMAL. What you think of is a person with no physical ailments, but believe me, everyone has their struggles. You know how mommy takes her pill every morning? Well, it's because she struggles with a mental issue called depression and anxiety. I get nervous in certain situations, I feel sad for no reason...etc. You can't see it, but I can feel it and it is hard to live with. Medicine helps. Daddy, takes medicine every day because his family has heart issues. He struggles with high blood pressure. So, I know you are suffering and it sucks. I am sorry it hurts on so many levels, but before you go and question why God made you the way you are, please remember, He made all of us to be who we need to be. You are strong for so many who struggle. They see you and think, wow, I'm gonna be okay. He can do this, I can do this. We love you and are here for you, you are special but no better or worse than anyone else."
Lokah Samastah Sukhino Bhavantu:  'May all beings be happy and free, and may the thoughts, words and actions of my own life contribute in some way to that happiness and freedom for all.

Friends and Family

Being at Hackerman-Patz means you are now at a home away from home. Everyone becomes friends and looks out for each other, shares food, video games, board games/cards, advice, and support.

It is also great to have visitors. Little brother, Jack, reunited with big brother in the hospital. I drove home to watch Jack in his Allstar baseball game and drove down around 10pm to be able to see Jeffrey early the next morning. They were so happy to see each other again.

We even took a trip to  the hospital playroom. We played Trouble, Would You Rather, and Playstation with some very sweet volunteers. 

Playing Madden11 with Mike

Throwing a bean bag into the creepy kangaroo. Same as when he was 3!

 Being silly with Jack on the heated waterbed

Then the day after discharge, we got a visit from family, who drove 2 hours south to visit...and allowed me to go food shopping! 

The hugs, giggles, and sillies are what brightens everyone's day. Plus, they brought lunch :)

Cutie Cousin Cady!

Grandmom and Poppy

Surgery Day 6/26/18

Tuesday, June 26th Surgery Day

Walking up the huge hill to the hospital

Current discrepancy is 7 cm (notice the hip screws from 2 years ago and the broken ankle screw)

The pulse ox was put on his middle finger. hehe

Dr. Standard marking his right leg

Our buddy, Ms. Marilyn

Daddy wearing his OR suit (showing off their pulse ox finger)

Saying our "see you soon"

In recovery 3 1/2 hours later

In Room 3102

Sleepy time

Things that made us go...oh boy!

*the waiting room with Jeffrey on the morning of surgery: We listen to the tv, which thankfully we couldn't see, and what is on? Oh, just a documentary on "The Family", a religious sex cult. (Insert hand on face emoji)
*After surgery, in recovery, Jeffrey comments:
           "Dad's in his regular clothes!" Explanation: Jeffrey last saw Jamie in his blue jumpsuit with
             hat and booties as he was wheeled into the OR.

           "They really 'nailed me' that time!" Explanation: Jeffrey and Jamie were joking around before               surgery about how after the surgery, it might feel like you got hit by a pitch on your hip on
             knee. Mix it with the fact they call the device in his femur the Precice Nail.

           "Mom, I have the urgent need to clean my room." Explanation: the anesthesiologist told                        Jeffrey of a possible side effect after surgery. He may wake up some mornings with a strange
            feeling. It will be the urge to clean your room. When you are done, you will feel so satisfied.
            Don't fight that urge.

*In the hospital room at night:
           "I like it better here because it makes me feel like I'm normal."

*In the hospital room the next morning:
           "Don't judge." Explanation: he was wearing a makeshift bib while bacon hung from his mouth              and syrup dripped down.

*Jeffrey is having trouble with his belly, and is constipated. Jamie is reading him poop poems. smh

This New "Device"

Pincare is a thing of the past! Woohoo!! Jeffrey's latest lengthening is done internally. Wait until you see this contraption!
We knew it would be less complicated due to the fact we do not have to wrap, unwrap, and clean external pins/screws. No tearing gauze from scabbed over open wounds. No more screaming and pushing away child.

During Jeffrey's surgery we got schooled. Literally! Ms. Lee showed us just how this internal Precice Nail works. First, let's shock you with the size of the apparatus.

It's like a giant super heavy suitcase filled with a remote box and a giant rolling magnet. We practiced using it by turning it on and laying it on our legs. It's heavy and lasts about 2 minutes. It sounds like my nursing breast pump used to sound...*reeeeer, reeeeer...* I will post a video once we start the lengthening process next week.
Below I'm posting the Precice Nail, aka the lengthening rod, which is inserted in the middle of his femur. As the remote rolling magnets turn, the rod stretches about .2mm. We will do this probably 4 times a day for a total of .8mm a day. (That is "point 8", not 8mm).

This is the Precice Nail (the paperclip is to show where the magnet is. On his leg, there is a huge marker line so we know where to line up the rolling magnet.) Also, if the marker wears away, we can use a compass, no lie!)

Prepping for Surgery

Monday the 25th, the clinic was short staffed so we literally waited for 3 1/2 hours to see Dr. Standard. It was um...fun...trying to fill the time.

Mommy cuddles

Daddy massages

Reciprocating Massage

Looking at the people below

It was Jeffrey's pre-op appointment where they take x-rays and go over the procedure and we can ask any questions we have. Once Allison (PA) came in and showed us the xray, she mentioned adding a new addition to our Precice Nail Femoral Lengthening. It was adding another 8 plate in his knee to help the valgus knee. (That just means his knee turns in.) They plan to leave the hips screws from 2 years ago and the broken ankle screw in since they're not bothering him.

Today's Pre-op xrays

After our appointment, we took out Jeffrey's brand new Xbox One S to hook up and download and update stuff. This really dated me and Jamie because we used to turn on a gaming system,  press start, and play. He was able to play and chat with two of his good buddies from home and I know he loved every second of that. But, alas, it was time for bed to prep for the next day.

Skip to Tuesday, surgery day.  Waking up, Jeff was so excited for his surgery that he woke up around 7!  He then, immediately, turned on the Xbox One S and starting gaming (Uhh, I guess he was actually excited to play video games rather than go have surgery ;)  Jeff  was lucky to be joined "Live" online by those same friends and they played some Star Wars Battle Front.

We had to shut down  the Star Wars "Live" battle, and take the short trek to the hospital.  Walking there, memories flooded as I took some snapshots of Jeff from behind.  Images of a goofy 3 year old making this same journey popped into my head as I watched the same goofy 11 year old strut across the street to his next surgery.

We reported to check in at 9:00am, for Surgery at 11:00. However, he did not enter the OR until at least 12:15. He was in the OR for 3 1/2 hours. The next post will show you what we did while waiting...