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.
Tessa you look so pretty! Missing you a ton!
Posted by: Grace | June 18, 2011 at 01:19 PM
Tessa - you look like you are recovering fabulously! You are definitely an old pro at this. Maybe you should write a book to help other kids get through this as well as you have!
Good luck with your physical therapy!
Posted by: Sarah Dickens | June 16, 2011 at 10:43 PM
Tessa,
You are looking great! The new ratchet device looks less cumbersome (and hopefully less painful) than the external device. There are a lot of people pulling for you back in K.C.! Your Dad has kept us informed on your progress and (as you might expect) he is very proud of his little (kinda) girl. Get well soon.
The Stanley's:
Brad, Susanne, Clay, Tyler and Pete
Posted by: Brad Stanley | June 16, 2011 at 06:58 PM
Oh great! Now I have to go get a cupcake!!
Seriously...you guys know how to make the best of a situation!!
Posted by: Sharon Lahr | June 16, 2011 at 05:41 PM
Hey, guys! We got back to KC late last night. Harry Potter World would be a distant memory now if it weren't for the humongous blisters on the bottom of my feet, and the fact that the boys duel about every 5 minutes with their new wands. So it is back to a routine life for us as well. Thanks for sharing your daily activities with us. It is comforting somehow, on this end, to be able to visualize where you are and what you are doing each minute of the day. stay strong! Love you! Z
Posted by: Zanny | June 16, 2011 at 10:50 AM
I think the measurement device looks like something out of Star Trek. And that you guys got a lot of dessert. (I fully endorse this, by the way.)
You continue to inspire, Tessa.
Posted by: Redfan85 | June 16, 2011 at 08:10 AM
Tessa, I love that this is working. That old picture of the cage still gives me the willies. I am really glad that thing is gone. Keep up the good work. We are all so very very proud of you. Love to All!!! GS
Posted by: Jim (Grampa) Smith | June 15, 2011 at 11:12 PM
Tessa, You are such a strong young lady. Haley (my 9 year old daughter)is following your blog. I think that is wonderful because one of the most important things to me is to show her examples of strong hard working young ladies and Hillary Clinton of course.lol:) I love seeing your happy smile as your dad takes pictures. Keep up the smiles and hard work.
Kim Turner
Posted by: Kim Turner | June 15, 2011 at 10:41 PM
You all sound like everyone is doing wonderful ! I know it is hard to get a routine going and get it all done and still have time to make some fun of the experience. Tessa - you are doing fantastic ! Mom/Dad - you are so fortunate to have the ability to share the time with a teenager and help so much with her cares. Everyone keep the spirits up - you are making progress !!!
Posted by: Diana | June 15, 2011 at 08:12 PM
You're a good man, Mr. Smith. Sounds like. Both of you are doing a great job of making the best of it. Just like any Dad, you are Semper Fidedlis- as the Marines would say. I try to squeeze in what little Latin I know for Miss T.
Enjoy this bonding time together. Go watch E. T. so you can watch a film about Elliot. Then go watch Super 8 and catch the similarities to E. T. Have fun and laugh together, it's all that matters!
Posted by: Mr. C | June 15, 2011 at 07:54 PM