It's a bird,...it's a plane...

it's the super kids at Sinai hospital!!! Last Wednesday we felt super when we were invited back up to the pediatric floor of the hospital for some special visitors.



We rolled up, literally, rolled in our stroller, anyway...we rolled up only to see Batman and Robin standing next to Batman's Lamborghini!



Batman and Robin greeted us with cool bracelets (or a more manly term might be...wrist bands). Jeffrey did not want a picture with them. He was just trying to take it all in. Like, who were these guys in tights???  and Why are they trying to give me stuff???

Hey Buddy, how are you today?

Great!

After coming to an understanding that Batman is a super hero like Spider-Man and Superman, we were able to go upstairs and see what else was going on. (Side note: to Jamie and Jay, being the non-comic/non-superhero expert I did put them all in the same category. I'm sure that Batman belongs to a different X-men/Marvel/Justice League kind of classification, but I'm not up on that so just bear with me. Thanks)
The elevator which once led us to Jeffrey's post surgery room 5 weeks ago, led us to a super-realm of fun! We even ran into Wonder Woman!

Strike a pose, Wonder Woman

Jeffrey was not reluctant, however, to pose for a photo with Wonder Woman! Interesting!

Batman & Robin

One of our heroines, Ginny :)

Caricature of Jeffrey as a Phillies player

Arm painting: which was face painting. Thank God she suggested his arm!!

After all the pictures and entertainment, we scarfed down some cake, then I had a piece of pizza. I know, wrong order, but it was Papa John's and so yummy looking. Oh, did  I mention free? We also got a superhero goodie bag, a Batman cape, tshirts, and we made a cape for Hannah, the girl who invited us up. She had to have a tumor removed from her hip/femur.
All of this was such a fun afternoon for the kids and adults thanks to  Hope for Henry, which is the charity that sponsored it.
You can also find out more by checking out the hospital's blog: www.lifebridgeblogs.blogspot.com
(On which Jeffrey stole a spot, actually 2. Video and Picture)

We may have even been caught on the ABC news (at the end of the clip)
www.abc2news.com/dpp/news/health/superheroes-visit-sick-kids-at-sinai

It really sounds like I'm trying to plug other websites, doesn't it? Sorry, totally unintended. I just wanted to share some good that other people are doing. My little guy just happens to be a part of it :)

Too much shoe hype!

Dad came home last weekend with the news that we'd be shopping for new shoes for Jeffrey. And not just any shoes...well, yea, ANY shoes since we didn't need a lift! SWEET!
So being the non-thinking mother I am, I mention light up shoes, since he could never have them when he had lifts. Bad move, dummy! The notion of only getting "light-up shoes" was stuck in my poor child's mind.
"These shoes are cute, Jeff." "Do they light up?" he asks. Nope.
Moving on.

Jack, however, really enjoyed the trek through the mall

Poor Jeffrey kept trying on light-up shoes, when we could find them, only to be let down each time. None in "wide", too heavy, out of stock... the list goes on.
Finally we settle on a pair of New Balance shoes, which look like big boy shoes to me. He gave in because he refused to go home without having purchased new shoes.
50 dollars later...

These ones don't light up : (

Some quick pics...

If ya got five minutes to spare, sit back and enjoy this little slide show of our Jeff's lengthening adventure thus far.  Hope you enjoy it!!!

That is Mii??

Apparently Jeffrey has a view of his parents that is slightly off from how we view ourselves. We LOVE to play Wii sports resort and Jeffrey makes sure we are ourselves. I created a Jill, but Jeffrey created a mommy and daddy. Weigh in on whether this is what we really look like or just the view from a 3 year old.

I think this looks like the "younger" Monica Geller on Friends

This one looks like a happy, yet creepy guy

Great!

Jeffrey, how are you today? "GREAT!"

Jeffrey, how's your breakfast? "GREAT!'

Jeff, are you having fun playing that game? "GREAT!"

How was the aquarium? "GREAT!"

How do you like your new shoes? "GREAT!"

How was pincare? "GREAT!"

 LIAR! haha

A PSA from Dad...

I've been catching a lot of flack for the lack of blog updates during my tenure at the H-Ps house.  You will all be happy to know that Jill is back in Baltimore with Jeff and will surely make up for all my slacking and laziness.  Let's face it, Jill is awesome!  But I would to take this opportunity to make some excuses for why there were such a small number of posts during my reign at H-P:

1.  Too many hours playing Mario on the DS...mostly Jeff's idea, scouts honor!
2.  Opening the billions of packages (and playing with all the stuff) that Jeff has gotten, everyone has been so generous.  I would like to take this moment to say a ginormous thank you to all of you for many thought, prayers, packages and well wishes,  you guys rock!
3.  Picking up the Cheerios that have littered the carpet of our room...I kid you not, they are everywhere.  I even found some in the train bucket and laundry bag...Jack then ate them, of course.
4.  Jeff had to help me create my Mii for the Wii...I look awesome, thanks for asking.
5.  Watching cool videos!  Jeff and I know lots about monster trucks, airplanes, trains, garbage and recycling, fire trucks, construction and demolition.  Don't know which is the best but Jeff has watched the train one about 654, 348 times. I have watched  it   654, 001 times!
6.  Batting Practice!
7.  Jeff has to say hi to everyone about a thousand times and if he doesn't know someone's name, he makes me find out so he can say hi to them.
8.  Giving and receiving lots of kisses, hugs and "I love yous"

Here is a little video of one of our favorite activities from the list...maybe we spent too much time doing this.

ENJOY!

"You're makin' Good Bone"

said Dr. Standard. Woohoo! This is good news and not so good news all at the same time.

Dr. Standard :)

Last Thursday, we had our 4-week appointment. The doctor was so impressed with his bone growth in the xray that he suggested speeding up the turns from 4 a day to 5.

Gained 2.4 cm = 1 inch :) so far!!!

This is so the bone doesn't grow too quickly and harden because we'd have to stop :( (If we did 5 turns Jeff would be stretching more each day, just over a millimeter. That, however, would change the name of our blog to "Just over 1 Millimeter @ a Time" and I couldn't have that so I said, "No". Of course I'm joking about that last part.) Anyway, we really aren't speeding up the turns because PT actually suggested we slow it down to 3 turns since Jeffrey is not getting the range of motion in his knee that we would like. We are keeping it at 4 turns and adding a medicine into the mix! Naprosyn! It slows down the bone growth, which is kind of ironic because we're here to lengthen.
Basically, the bone stretches and new bone is forming. As the bone stretches the muscles tighten becoming painful and more difficult to bend at the knee. If we get to a point where he does not make any progress in bending and we are stuck at like 45 degrees, we have to stop lengthening. So we are on a mission to do more knee hang exercises so we can improve his degree of bending.

Knee hangs

Right now we are stuck at 55 degrees, which could be worse. It is painful for Jeffrey and his quad is getting stronger so he even fights the bends, the little bugger! Keep those prayers coming.
The bone groweth awesome, let's get that knee a bendin'! How low can you go?

Batting Practice

All the Schwanti have grown quite attached to our home away from home, Hackerman Patz.  The house is filled with good people, love, fun and more love.  I think that Jeff has it in his twisted mind that he is going to stay at H-P forever. 

 H-P is great, but "Home Home"...well, "Home Home" offers things that we can't get at HP.  Cooper, our own beds, our family and friends and of course, plenty of room for batting practice are some perks of "Home Home".  

While brushing my teeth, I kept hearing "Boom" followed by "Thwack".  Over and over the sound reverberated through out the house.  When I went to investigate, this is what I saw...enjoy!

Mater: Ain't no need to watch where I'm goin'; just need to know where I've been.

Getting the opportunity to vacation this summer down here in Baltimore has allowed us to take in some of the sights.  

We have done some malling,  shopped the finest shops (Walmart and Target) and

and tasted only the finest Italian cuisine (Chef Boyardee, Stouffers).

Up next:

The Schwanti invade Oriole Park at Camden Yards 

It was chest protector back pack give away day at Camden Yards.  This  back pack not only holds stuff, but also will protect the whole body (kinda like a big turtle shell, huh?)

We scored some sweet seats (thanks to the Michigan Schwanti) and had a blast watching "practice".

We enjoyed the delicious, and oh so good for you, ball park food.  And NO, we did not make Jack eat random food off the ground...that was his choice.  He ain't called the landfill for nothin'.

No night is complete without a foam finger on the foot.   Feel bad for the guy sitting in front of Jeff...he was in prime poking range.

As with most of our adventures,  Jeff is out like a light for the ride back to H-Ps.  Upon arrival, however, Jeff will wake with a startle and say "can we play alittle bit".  

2 for the Price of 1

Can we get a 2 for 1 deal at the doctors, do ya think? So, by now you all know about our sweet tough cookie, Jeffrey. Not much is said on here about #2, Jack E. boy! Let this post be about him. "Why?", you might wonder. Well, he too may have some sort of leg length discrepancy. We noticed a while back that our 1 year and 5 month old boy's left leg looked a little smaller than his right. Being the slightly neurotic mom I am, I kept holding them side by side and looking at them from every angle. I brought it up a few times at the pediatrician visits and it was dismissed as normal. Until one visit when one of the doctors brought it to my attention before I said anything.  I was relieved to know that I wasn't the only one noticing this, but at the same time I was thinking, "oh, crap! Again?" His difference is not nearly as noticeable as Jeffrey's but to mom and dad, it was a concern. So, on Thursday we have appointments for both boys with Dr. Standard. Jack's is at 12:30 and Jeff's is at 1:45.  Maybe they'll cut us a deal: the 2 for 1 special.
Or...maybe Jack is just faking it to be like his brother!
Here are some ways in which Jack follows in Jeff's footsteps...

Biting frozen pancakes before they are microwaved

They both like "double tubbies"

Neither one likes mom taking their picture

They LOVE being outside

They bring toys/sports equipment along for the ride wherever we go

They LOVE their desserts. Mmmm....chocolate pudding

They are both good at being silly

They both like shooting hoops

They like wearing baseball tshirts and watching the wild life in the yard

Playing with water at the table
Jeff was doing it so of course Jack had to get in on the action

 Jack tackles like his brother

He likes to play baseball like his brother

Jack is starting to feed Cooper, just like Jeffrey

Butt in the end, our boys have a lot in common and a lot that makes them unique. 
We love them both very much and will do anything we need to to help them become amazing big boys!
(even if it means we get to stretchjack too! )

Feet, Trains and Tears...

Life continues to roll on over here at H-Ps and Jeff is, well uh...Jeff.

FEET: Jeff has decided to become the unofficial foot police in the house as he reminded a H-Ps rookie that the house has a "no bare feet" rule in the common area.  Unfazed, the woman continued on her bare foot stroll through the house.  Jeff's response..."...now it's gonna smell like feet in here." I hid in embarrassment, Jeff just continued on his way.

TRAINS:  We have been having a good time with a Thomas train and some tracks that came in one of Jeff's packages...the trains go everywhere, they even tried to go into the bathroom with him.  Check out our little "movie" of one of our train adventures.

TEARS:  Jeff has proven to me that he is one of the toughest little buggers I have ever seen.  The H-Ps house is full of kids like Jeff...more heart and courage than you can shake a stick at.  We continue to fight through pin care and physical therapy with some tears and screams but Jeff soldiers on.  But as my big brother says, "everyone cries in therapy."  

Gotta go now and finish up dinner so that Jeff can go out and enjoy art night...we're making pirate ships and surf boards...

Port Discovery

Posted by mom: (this was one adventure from last week)
Our friends, Stacey and Kevin, drove with us to the inner harbor to visit Port Discovery, a children's museum. We ended up squeezing 2 strollers into the trunk tied down with a bungee cord. We left the wheelchairs behind.

Our first stop was the 3rd floor where they had a Bob the Builder exhibit. We got there just in time to see the real Bob on the 2nd floor. Yea, that makes sense. Let's have the exhibit up one floor and the live character down on another. We nearly missed Bob, but we got our photo op!

Having a child with a disability that limits their activity really opened my eyes. I felt like one of those parents who wanted to get up and complain to some type of management about how the doors aren't handicap accessible and there are some exhibits only reachable by stairs. Some things were even too high up for our 3 and 4 year olds to reach. Luckily, our boys are at the point of post surgery where they can walk/hobble around holding our hands, but that was even tough.

Jeffrey wanted to go up steps to slide down slides. Go for it, kiddo!


He liked playing in the water works section. I was nervous about letting him since he could get his gauze all wet. That would mean, yep, you guessed it, PIN CARE when we got home. Luckily, we emerged with dry legs.

After the water worries of momma, we got to play diner. Jeffrey cooked for me, apron and all. He kept demanding I get out of the kitchen and go be a customer. If only he could cook for real.

This next part was kind of cool, but more for older kids. It was like a mystery house. One section had a mirror that made us look like we disappeared. (Let's see if the video will upload)

We had a good time and all the walking exhausted the boys so much that they fell asleep on the short ride home.

Changing of the guard...

               

Since the beginning of this journey,  Jill has been  keeping everyone up to date with the going ons of Jeffery James and his "magic" leg.  This weekend saw a changing of the guard.  Jill has returned to her home planet, New Jersey (South Jersey according to Jeff), and I have set up shop at the Hackerman-Patz outpost, ready to care for Jeff and this Blog.                                       

That's right, the boyz are on there own here at "Peppermint-Patz" so let the wild rumpus begin...

Jeffisms

Jeffrey was mad at his Mario dying, again! "Damn it!"

While playing DS:
Mom: Ugh! Mario keeps dying.
Jeffrey: That's okay mom. You can try again, Never give up!

While looking at a magazine:
Jeffrey: She's a gawl (girl).
Mom:  How do you know?
Jeffrey: She's wearing pants and she's got milk utters.




Mom: Let's go to the bathroom before we leave our room.
Jeffrey: Good idea. I really super have to go potty, bad!

Jeffrey: Where's my DS pen??? = This one must get asked at least 5 times a day!


New Person: What's your name?
Jeffrey: Jeffrey Jamers Schwantes

New Person: Where do you live?
Jeffrey: Souf Jawsy. Some people call it New Jersey.

Talking to random strangers and proud of himself he announces: "Look, my knee bar is out! I'm letting my knee hang!"

Mom: What am I gonna do without you next week?
Jeffrey: Play by your own...or with Jack.

Hobbling with no hands to go play on the computer: (mind you it's one room)
"I'm going into the tv room, and the computer room and the exercise room and the chair room and the mouse room."

Way to Grow, Jeffrey

Up the elevator to the 2nd floor and into the waiting room. Our appointment was 12:00 and we've heard the horror stories of waiting hours to get in to see the doctor. I was kind of okay with that because  I know Dr. Standard devotes his time to each patient as needed. Luckily, we had the DS. Never thought I'd say that the DS was a Godsend, but waiting and playing a DS made the wait very bearable.

When we saw him around 2ish, after xrays,  we heard all was good! He's grown half an inch in 10 days of turning. The bone growth looks good and he's weight bearing well. He's mister independent.
I don't know how long we'll be down in Baltimore.
We know he needs physical therapy 5 days a week during the turning phase, 3 days a week when we are done turning just waiting for the bone to catch up and heal together. I don't know if we'll find a place close to home that is nearly as good as it is here. They do video tape the session to show any local therapist. It's just a matter of finding a therapist that works with pediatrics and knows what they are doing.
Here are his xrays from before surgery on July 21st and from yesterday's visit, August 5th. Pretty cool!

original 6 cm discrepancy

The fuzzy space in between the bone is growth :)