The Peach is doing well, and we've pretty much settled into our summer routine back home again. Here are a couple of photos from dunner at Minsky's Pizza. Today we hung out, Tessa drew and Sam helped me clear the cardboard out of the basement. Beautiful day here, had the windows open and no AC, very nice!
Tomorrow she begins physical therapy again... More later!
We made it home again last night! Kathleen was a huge help in navigating the trip from the apartment to the airport while toting three weeks worth of luggage, two guitars, etc. Tessa did fine on the airplane ride home without any pain in her leg. The time really went by quickly now that we're on this side of it!
I added a few photos from her last day of therapy- she's posing here with her therapist Kym, who is the only one still remaining at Sinai from Tessa's first operation in 2004. The years gave been good to both of them!
Tessa also wanted to add this photo from the therapy room of EVERY DISNEY MOVIE EVER!!!
And finally, a pic from the plane ride home with Kathleen:
Big day yesterday: Tessa had her penultimate physical therapy visit and they were very happy with how she has been doing. Knee flexion is always a big issue after lengthening surgery, and she's up to 72 degrees now, which is right on schedule! She'll have her final visit with them later today, then we will pick up again back home next week.
Kathleen came to visit on the train after a weeklong family reunion cruise through the northeast. She's a longtime friend of Tessa's and was in charge of helping her get from class to class in her wheelchair after the last operation in 2008. It's great to have some more company and I really love having an extra helper for these last couple of days and for the trip home!
And here they are back in 2004:
We grabbed some dinner at Potbelly's on the Inner Harbor, and then went to the football stadium for the U2/Florence and the Machine concert last night! It was a pretty monumental undertaking, a four-mile round trip walk from the apartment pushing Tessa in her wheelchair through a mass of 80,000 people over some pretty rough terrain. It's amazing how easy it is to take walking for granted! It's easy not to notice the city planning stupidity that abounds (like why not have wheelchair curb ramps on BOTH ends of the crosswalk, not 20 feet up the street? Don't get me started...)
The concert was pretty amazing- they use a ginormous octopus/spider/spaceship stage that soars nearly 200 feet in the air and reminds me in scale of the base of the Eiffel Tower:
The opening act was Tessa's current favorite, Florence and the Machine:
U2 was amazing! I hadn't seen them in concert in 24 years, and the theatricality of the stage and the performers was really something special. This was the highlight for me, "Where the Streets Have No Name":
The band is really close to Springsteen. When Bruce gave the introductory speech for U2's induction into the Rock and Roll Hall of Fame, he said they were "the last band that I would ever know all the names of" (Bono, The Edge, Larry Mullen, Jr and Adam Clayton).
Bono sang a snippet of "The Promised Land" at the end of "I Still Haven't Found What I'm Looking For", and at the end of the night Bono had everyone hold up their cell phones to make a starry sky in rememberance of Clarence Clemons. He then added a "Jungleland" coda to "Moment of Surrender":
The audio is a little rough, but at the end he said "Clarence Clemons, RIP."
Time to get packed up for therapy... home tomorrow!
We had a great couple of days with Madi! She had to head home last night, and we miss her already. Here are a few pictures from her visit:
On Sunday, the girls let me choose what we did since it was Father's Day (a big "thank you" to Madi's dad Kent for allowing us to borrow her on his big day!)
We went to see "Green Lantern" (which rated a solid "meh"), then went to the Inner Harbor to stroll around and get some sushi. Madi sprained her ankle badly last weekend doing gymnastics and was hobbling around in a boot all weekend:
Having some Edo Sushi near the USS Constellation clipper ship:
The Inner Harbor was busy with paddle boats (that's the Aquarium across the water in the background.)
It's hard to get Tessa to smile for photos, so I end up shouting out embarrassing urological jargon at the moment of snappage. I think she looks really pretty in this one:
********* ************** ************ **************
On Monday morning, we had to get up early for her physical therapy appointment, then had to wait around the hospital for a few hours until her doctor's appointment with Dr H. Here they are sleeping in the cafeteria:
Waiting for the doctor whilst waching Spongebob:
Dr H was very happy with her progress in physical therapy wnd with the results on the Xrays.
This is a film of her right femur with the 2.2cm lengthening:
The white rod in the middle of the bone is the ISKD, which has now stopped making the bone longer and now is just keeping it straight with the cut ends in close proximity for further healing. We'll need to get another Xray next month back home, and it will likely show a gradual increase in the whiteness of the gap, indicating that the new bone is growing stonger with time. Once the new bone looks the same as the older bone, then she can get rid of the crutches!
A job well done, guys! I felt a great sense of relief after her operation two weeks ago, knowing that she'll never have to have another leg-lengthening surgery, but the sense of accomplishment is greater now, because she's finally reached the finish line, her legs are equal! There's still some work ahead, she needs to finish healing, get her leg to bend again, and (next summer) get the rod removed, but we've just about got this done, and after 10 years, that's huge!
************** ***************** ***************** *******************
To celebrate a great doctor visit, we went to the Towson mall to build some bears!
Madi with her fancy bear, Sally:
Tessa's Jedi Knight bear: Obear-Wan!
Yesterday, we couldn't make it to therapy because the freeway was closed due to a bad accident. Instead, we spent the afternoon in Fell's Point, which is a cool old cobblestoney part of town from the early days of Baltimore:
Gelato buddies:
The girls decided to go swimming before Madi had to head home. Here they are both gimping their way to the elevator on crutches:
Hot tubbin':
Madi's plane was delayed for a long time because of weather, so we stayed with her at the gate to keep her company:
We finally made it home around 10PM after an exhausting but fun day. Today we get another visitor: Tessa's friend Kathleen will come to help us finish up the last couple of days here before we come back home on Friday. Tonight: U2 concert at the football stadium with Florence + the Machine, one of Tessa's favorite bands as the opener!
We've had a roller-coaster mix of joy and sadness here in Harbor East this weekend. First, the good stuff! Susan and Sam came to visit for a 24 hour turnaround yesterday, and they brought a surprise guest: Madi!
Madi has been Tessa's great friend since they were in preschool together. She's in the middle of the pack here on the day of Tessa's return home in 2004:
And here they are in 2008 when Madi came to visit for a few days here in Baltimore:
It was great to have some company and to have both of my kids here right before Father's Day!
Sam and Tessa checking out some video clips on the iPad:
Tessa took this one of Sam, which cracks me up severely:
The Peach:
We had a street fair just outside the apartment all day yesterday with live music, food, jugglers, etc:
The view from our 13th floor balcony:
Sam and I went for a swim in the apartment pool after lunch, and we all went out to the movies in the afternoon- Sam and I caught "Super 8", which I loved! It reminded me a lot of "E.T.": set in the same suburban 1979 setting, menacing government figures threaten a group of smart and resourceful kids making their way through an alien visitation mystery. Also, the way "E.T." was at its heart a story about kids dealing with divorce, "Super 8" is really about a kid letting go of his mom, who recently passed away. The girls all went to see "Bridesmaids" and were cracking up about it for the rest of the night. Go see it!
********** ************ ************** ************* ***************
Now, the sad part of the day. At around 8:30 last night we were all sitting around the apartment watching some TV and I read a news alert that Clarence "The Big Man" Clemons, saxophone player for the E Street Band, died of complications of a stroke he suffered last Sunday.
The loss and sadness is profound. He was a larger-than-life figure for those of us in E Street Nation. Bruce would introduce him during concerts as "The King of the World! Master of the Universe! The Minister of Soul! The Biggest Man You Have Ever Seen! You want to be like him but you can't!"
Susan and I saw him play with Bruce around 35 times, and briefly met him once in Sweden. Here's a photo outside our Stockholm hotel after a show in 2007:
He had a lot of problems with his back and hips from years of playing a vigorous, physical show live on stage, and from his younger years as a football player. He described the pain from the last tour in 2009 as "pure hell". That night in Stockholm he fell down onstage and Bruce had to help him back up to his feet. "Big Man Walking!", Bruce exclaimed. Even though he must have been hurting, he looks so happy in this picture holding court with his fans. He had a son who lived in Stockholm, who played guitar on stage with the band that night. At this moment he was telling the fans how Sweden was like a second home to him.
This picture was at a restaurant in Calgary the night before a 2003 show. We had met Susan's brother Tom and his fiancee (now wife) Lisa there for the concert, and were thrilled to see that the band had picked the same steakhouse for dinner. We didn't want to be intrusive fans, but we did ask the waiter to snap this picture from a perspective to get Clarence in the background. You can see that he obviously knew what was going on and thought it was funny:
At the end of November 2009, I went to Buffalo, NY to see the last concert of what would turn out to be the last Bruce Springsteen and the E Street Band tour with the Big Man blowing sax. It was the end of the worst year of my life, a 12-month period that included immeasurable failure and loss. I didn't have anyone to go with me, and nearly didn't go at all (tip: never go to Buffalo in late November), but I had a strong feeling that this might be the last chance to see this band I loved, to hear the music that had sustained me through those dark days.
The band was going to perform the entirety of Bruce's first album as part of the show for the first time ever, and it seemed to have the sense of a closure to this 35 year era of rock 'n roll greatness. Years ago, Bruce would tell long mythical stories of the band's early days during his song "Growin' Up". He had mostly given that up, but that night he told this great story of the first time he met Clarence Clemons. I've heard it told dozens of times in dozens of different ways over the years, but this was the best I've ever heard.
Here's the song in it's entirety from that night, story and all:
Growin Up
During the story, he and Clarence recreated the classic pose from the cover of Born to Run, voted last week one of Rolling Stone's top 10 best rock album covers of all time:
I love the symbolism of the pose: Bruce leaning on Clarence. Without The Big Man, there's no E Street Band, and nothing happens the way it did. He brought the racial integration (although I would say many nights he was the only black man in the arena) the urban grit, and the soul and feeling to the music, and in the live shows he provided a compadre for Bruce to play off of onstage.
Super Bowl Halftime, 2009- Bruce says it best: "This is the important part!" (and watch out, you're about to get Bosscrotched!)
Badlands from NYC 2000 (Sax solo at 2:45- my friend Yvonne is in the front row, and Susan and I are up in the rafters next to a drunk dude trying to barf up his toes):
This next one destroys me right now. "If I Should Fall Behind" began as a beautifully honest love song about the trials and missteps that all couples might encounter on their journey together through life. In 1999 it became something else- Bruce had reassembled the band after a ten-year hiatus, and the song was reworked for the reunion tour. Bruce shares the sung verses (which doesn't happen often) with the rest of the singers in the band. I've always thought of it like the rainbow in the Old Testament flood story- a promise that they will never break up again..."'til death do us part".
(Clarence's sax solo and sung verse begins at 02:45, but just listen to the whole thing)
My lasting memory of Clarence in concert is from a song that he didn't play sax on. We were at a show in Dallas in 2003, up in the pit near the stage on Clarence's side (stage right). Bruce was singing "You're Missing", a heartbreaking song about grief and loss. I looked at Clarence, and he had tears streaming down his cheeks. Keep in mind that they had been touring for months, and had probably played that song a hundred times by then. Who knows what was on his mind, but I think he's just someone who really feels it, you know? Some people just express emotion in a really raw, deep fashion. Tessa and I put on E Street radio last night, listened to Jungleland and just hugged and cried.
Jungleland 1980 (Big Man sax solo at 4:39):
Rest in the peace you've earned well, Big Man, and thank you for helping us feel something for all of these years.
Our Wednesday was pretty exciting here in Harbor East! After therapy, we took off Tessa's dressings for the first time since surgery. Seeing the incisions was pretty traumatic for her- she doesn't like imagining the graphic details of the operation, like the sutures passing through skin, and it's hard for her not to picture that when you can see the individual stitches. I tried to reassure her that the scars would heal nearly imperceptibly and would be nothing compared to the deep scars she carries from her past operations, but it was still upsetting.
For a distraction, we then watched some Freaks and Geeks. This show totally cracks us up! It only lasted one season back in '99, but was created by Judd Apatow, who has gone on to produce the funniest movies of the last ten years (Anchorman, The 40-Year Old Virgin, Superbad, Bridesmaids). It's about high school freshman in 1980, so the pop culture references are right in my wheelhouse and it's fun to explain to Tessa what they're talking about. It has a lot of actors who have gone on to great success, like Seth Rogen and James Franco.
After that we decided to go hunt and gather some supplies. There's a CVS pharmacy and a Whole Foods market just down the street, and we wheeled on down through a light rain to get some Band-Aids and food for dinner. Tessa wasn't in a photographic mood, but I was able to sneak in a few:
The view going down our hallway towards the elevator:
Street-level view coming back from Whole Foods:
Mirrored elevator:
View coming back from the elevator towards the apartment:
After a nice vegetarian dinner I subjected her to another period piece comedy from my youth: Meatballs (with Bill Murray)! She thought it was funny and that the 70's fashions were ridiculous. It was a time when hair was long and gym shorts were truly short.
This afternoon- the last therapy session of the week! Susan and Sam visit tomorrow, and it will be great to have some company and hear more about Sam's epic trip to Orlando with Zanny and Mitchell!
Things are rolling along here in Baltimore. We've settled into our routine after three days of physical therapy. Here's how the days go:
0630- Usually wakes up feeling a bit of leg pain after the night of sleeping, and quickly goes back to sleep after taking a dose of the good stuff. I spend some time cleaning up the kitchen, do laundry or whatever. Today we got a new couch that works much better!
between 0900 and 1100- She gets up for the day, eats some breakfast (fruit, toast with Nutella, egg-white omelette, vegetarian sausage.) Depending on the therapy schedule, we might watch some TV, work on her therapy exercises.
1200- We pack up the stuff we need for therapy, which takes place at Sinai Hospital, about a 20 minute drive from our apartment. We need her wheelchair, crutches, an ice pack, pillow, and bag with pain meds and other various and sundries. It's not an easy trip- we have to navigate the journey from the apartment to the parking garage, which usually requires riding on two different elevators and going through 4 or 5 doorways. I always hope that someone is walking through the doors when we get there, because otherwise they're difficult to navigate sometimes.
1PM- Physical therapy starts. It's an interesting experience for her there. She told me today that even though that room has been the location of some of the most painful experiences in her life, she does enjoy going there. It's brightly painted, the therapists and other kids are really nice, and they have nice snacks and every Disney movie ever made (today: Lion King 2). Here's a photo of Tessa with her therapist and friend Brita in 2004:
It's also a place where little kids are going through extremely painful therapy, trying to force their tight knees to flex just...one... more... degree. It's a difficult room for me to be in as a parent, even though I understand the pain is transient and leads to a worthy goal.
One other aspect that lends a surreal air to the experience is that many of the patients are dwarves going through operations to make their arms and legs longer. It's difficult not to leave there with a lasting memory of dwarves screaming in pain.
4:00- We make it back to the apartment and just hang out, checking the comments on the blog (hint, hint!), read, go to the mailbox (hint, hint), and watch TV. We brought the DVD's of Freaks and Geeks, My So Called Life and Gilmore Girls, which makes up for the dearth of summertime choices on cable.
Several times per day, we need to check the progress of her internal lengthening rod. It's called an Intramedullary Skeletal Kinetic Distractor, or ISKD. It works by slowly ratcheting outward every time she rotates her upper right leg:
It is programmed to distract until her femur is just about 2cm longer. Our job is to check the progress of the lengthening with an external monitor device.
It tells us every time the leg lengthens by 0.37 mm. She is currently growing at a rate of about 1.5 mm per day. Her knee flexion is a bit tight, but we know from experience that it will come back with work.
6PM- Dinner: sometimes we go out, tonight we had pasta and Sockarooni sauce in the apartment.
7PM- We try to find some fun somewhere- tonight we're just hanging out at the pad relaxing after an eventful Tuesday night when we went out to see Bridesmaids at the theater down the street. It was really funny (and just a little bit uncomfortable with the R-rated parts.) One of the characters was a baker, so we both had a cupcake craving afterwards. Luckily, Whole Foods came through bigtime:
11PM- Time to head to bed, pain meds, ice packs and a pillow for the leg. Tonight will be great- we have a new living room sofa today, so we were able to move the twin bed back into the bedroom. She likes to have someone in the room when she falls asleep, so the last three nights I've curled up in a pile of blankets on the floor inside the empty bed rails. It will be nice to have a mattress again!
It's definitely no one's idea of a dream summer vacation, but I'm very aware of the gift I've been given here. It's a rare father who has the chance to spend 24 hours a day for two weeks straight with his teenage daughter. The time will pass way too quickly, and it will be a time I'll cherish forever.
A really great day all around today here in Baltimore!
We started at the physical therapist's office for her initial evaluation. All the news was good: her knee flexion was nearly 80 degrees without any excess effort, and her muscle strength wowed all the therapists- probably thanks to all of her personal training sessions these past few months.
Afterwards, we enjoyed a nice lunch out in the patio next to the hospital cafeteria. The weather in Baltimore has been amazing- sunny and cool, low humidity.
Next, she had her first post-op visit with Dr Herzenberg. The Xrays showed that she her leg is now nearly 10mm longer, which means that the lengthening is nearly halfway complete already! We should be all finished by the time we go back to see him next week.
Here is the comparison (the one on the right was taken during the operation last week)
Thank you all for putting comments up on the blog. She is really missing home and loves to hear from you!
Here is a pic from Orlando, where Mitchell and Sam continue to tear it up on the vacation of a lifetime. Can you identify the Jedi below?
We made it out of the apartment this evening for our first postoperative trip tonight. It was a beautiful cool, breezy evening for a stroll around the Harbor East neighborhood. We ended up at a deli around the corner where she had a nice Caesar salad an I had a gyro as big as my head (note to self: go for a run tomorrow.)
Sam and Mitchell are still having a blast with Zanny in Orlando. Today was Star Wars day at Disney! (Nothing like wearing a full-body Stormtrooper costume when it's 110 deg F. Makes you wish you would have pulled Hoth duty.)
Keep the comments coming! (Also, if you get to this page via my Facebook feed, make sure you comment here and not there so she will be able to read them. Thanks!)
Sad day in Baltimore, as Susan had to catch an early flight back to Kansas City. She has done an amazing job of shepherding Tessa through the hardest part of this and establishing the routine we'll follow for the next couple of weeks. Lots of tears all around this morning, but Tessa's feeling better now, watching a crocodile rip a dude's arm off on Animal Planet's "When Animals Attack". You never have to look too far to find someone who's got it worse than you do, I guess.
A few pics- here's Tessa opening a record mail haul on Saturday, including a beautiful friendship bracelet from Tessa's friend Abbey with the synonyms "Tessa" and "strength".
News from Orlando: Sam and Mitchell are having a blast getting their Potter on!
Recent Comments