Seven and a half years ago, we started this blog (the first post of it is still available at a link on the right). The purpose was to keep family and friends informed about what was going on while Tessa Jean was going through her first leg-lengthening operation in Baltimore, MD. She was born with Ollier's Disease, which makes her right leg grow more slowly and bendy than her left one.
We learned about the diagnosis a few days after Sam was born in 2001, over ten years ago. Four-year-old Tessa had been jumping on our bed with her friend Abbey, and when she jumped down onto the floor, her leg really hurt and she wouldn't walk on it for two days. Early on, there was some uncertainty about what the X-rays showed, and we had to see a few different doctors before we learned the good news that it wasn't cancer, but also the bad news, that our little girl would have a very different childhood than we, and she, had expected. She would have to undergo a series of operations to correct what would otherwise grow to be a 7 inch difference between her legs. These operations would be very painful experiences, physically and otherwise.
We were here in 2004 with a tough little girl who faced her challenges with a fiery resolve and positive attitude. She worked hard to achieve a 6 cm lengthening and straightening of her upper leg. We came back in 2008 with a young woman who was a bit more guarded and much more emotionally affected by the pain of a much bigger and more complicated operation than she had previously experienced. Through a gut-wrenching experience that will likely be the hardest thing she will ever do in her life, she achieved a 9 cm lengthening of her upper and lower legs.
We're back again now with a woman who's nearly fully formed!
Here is a picture of Tessa 7 years ago with her surgeon, Dr Herzenberg:
And here they are today:
So many other things have changed as well. The absence of Tessa's Gramma Judy is felt deeply now. She was our first postoperative visitor back in 2004:
In 2008 she was too sick to come out and visit, but her support was always there through phone calls, blog comments, gifts, and just knowing she was there. Tessa and I talked last night about how when you love someone sooooooo deeply (Mom loved to put too many "0's " in her "so's"), that you carry them with you even when they aren't around, even when they're gone, so we're trying to think about it that way, but it's still hard.
Our family dynamic has obviously changed a great deal in the past three years as well, but one thing we've always done well is rally to a cause, and with the help of our family and friends, we'll do it again and get our girl through this one last time. She only needs 2 more cm to have equal legs again, and this time the technique will be less painful and difficult, but it will still be really hard for her.
Tessa loves to read the comments that people leave on this blog, so please chime in! We're so far from home, and it's a great feeling to know we're not alone out here.
Here are a few pictures from our weekend getting settled in:
Lazing around the apartment watching "Freaks and Geeks":
Sam made this tableau with his Toy Story toys:
Our apartment from the outside (ours is the second balcony down from the top- 13th floor. Lucky!
Last night, a Hard Rock dinner and Barnes & Noble shopping in the Inner Harbor:
At the waterfront:
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Tuesday at noon Tessa will be having her operation, so keep a good thought for her at that time. I'll be updating the blog frequently, so stay tuned and keep commenting!
Hey good buddy, when you get back we should eat delicious redvines in our hidden swimming pool and laugh at Draco's diapered tush.
Posted by: Brianna | June 12, 2011 at 12:15 AM
Tessa, it's amazing how strong you've been throughout all of this. I know its been a really hard journey for you, but you're almost done! I hope the operation went well today. My prayers are with you all the way. Love you Tessa!
-Beth Dudley
Posted by: Beth Dudley | June 09, 2011 at 09:49 PM
We love you Tessa. So glad it'll be all over soon. You're an absolutely amazing person. Good luck and know that every single on of your friends back home love you and are inspired by you every day.
Posted by: Brianna | June 09, 2011 at 01:28 PM
Tessa! I know we haven't been friends for very long, and we aren't that close, but I am thinking and praying for you. Can't wait till I can see you again!!
Love,
Charlotte :)
Posted by: C Nodarse | June 07, 2011 at 03:29 PM
You are the most brave lady I know. I love you. Wish I was there holding your hand. Z
Posted by: Zanny | June 07, 2011 at 02:32 PM
Tessa -
I have been thinking about you and praying for you today. I know you are going to do great! Your strength is so inspiring! Keep your chin up kiddo!
Mrs. D
Posted by: Kelly Drummond | June 07, 2011 at 12:23 PM
Tessa. Erin and I are sending big prayers your way today. I know I've never met anyone with the unique qualities you possess, which in combination, give you the ability to accomplish such a huge challenge. You are almost there. The end is in sight. Best wishes, dear. Erin and Carla Trainor
Posted by: Carla and Erin Trainor | June 07, 2011 at 11:38 AM
Good luck Tessa, soon it will be all over!
Posted by: Nancy Stalkfleet | June 07, 2011 at 11:32 AM
TESSA!! We will be thinking about you all day! You are so brave and strong and I cannot imagine what you are going through! (and I thought soccer was hard) I cannot wait to see you back and much taller than me! You GOT THIS! You will do amazing, I just know it!
Love,
Grace
PS: I'll get Kate to draw an extra special picture for you! You can hang it up and know that you always got us Heitmanns behind you and supporting you 100%!
Posted by: Grace Heitmann | June 07, 2011 at 11:03 AM
Tessa,
It is just now noon in Baltimore and I'm saying a prayer for you here in KC. You are wonderful and strong and I'm sure you will come through this last operation with the same courage and grace you've shown in the past. Missing you here at Vis!
Love, Mrs. Winget
Posted by: Bridget Winget | June 07, 2011 at 11:01 AM
Hoping for a speedy recovery. We love you!
Sean, Sarah, Sophia, and Sayla
Posted by: Sean Hostetter | June 07, 2011 at 10:52 AM
Sending good Karma your way. Hope you're back with your friends and family soon.
Feliciter!
Posted by: Mr. C | June 07, 2011 at 10:38 AM
TESSA!!! I miss you already, and I'm thinking about you LOTS today. You're in my prayers. You'll do so well, I just know it. Go out there and show them what you're made of!! Enjoy your favorite city, and just keep thinking about how great you're going to feel when this is all done. Love you!!
Abs
p.s. Kathleen, we want her to HEAL, but we don't want her to wear HEELS.
Posted by: Abbey | June 07, 2011 at 10:03 AM
Tessa Jean, As I told you several years ago when you started this painful but meaningful journey, you are one of my heros...certainly one of the youngest heros I have. Best of luck in this final ordeal. May you come through it as well as you have the others...and continue a great life. Dennis Guffey
Posted by: G-man | June 07, 2011 at 09:15 AM
Hey Tessa-- What a long journey. Almost over! I liked how your dad described you because that's how I think of you--someone with a fiery resolve and positive attitude. My best thoughts, prayers and wishes are being sent your way. I know that you will do great and that we will eventually see each other in the sand again!
Posted by: Sandy Wirtel | June 07, 2011 at 09:15 AM
Hey Tessa!! I am so proud of you! You look so beautiful in all of these pictures! And those iPhone speakers? They look like they cost more than the iPhone! ;) My whole family is thinking of you and praying for you, so don't you worry about anything. I can't wait to see you in Baltimore when you're even TALLER than me. Thanks for that. I vote we forbid you from wearing heals. It's not even fair anymore. I love you girl! Stay strong!
Oh, and DON'T STOP BELIEVIN!
Posted by: Kathleen Blanck | June 07, 2011 at 08:47 AM
Tessa you truly are a strong and beautiful girl. I will be thinking of you while you are gone. I showed the pictures to Judah and he smiled and said, "Tessa!" he also LOVED the picture of Sam with all his toys. Good luck with your journey and we'll see you on the other side of it in one short month!
Posted by: Diana Edwin | June 07, 2011 at 08:20 AM
Best wishes to you all as you see this day come and pass. Looking thru the previous blog posts is a vivid reminder of the strength you have held thru the years with this. My thoughts are with your parents also - it is very to see your child go thru all this. Take care.
Posted by: Diana | June 07, 2011 at 07:21 AM
Hi Tessa, I thought about you first thing when I woke up this morning! Good luck today -- remember this is the beginning of the end of this long fight -- you're almost there! Kathleen can't wait to see you in Baltimore. XOXOXO
Posted by: Jennifer Blanck | June 07, 2011 at 07:11 AM
Tessa, all of us in London wish you a successful surgery and a quick recovery! You can do this! You are one of the most courageous, resilient, and determined young ladies I have ever seen. You are a lot like your Grandma Judy that way. She will be with you in Spirit and in love, as will all of us who love you and are far away. Give your dad a hug from us. He loves you so much and will be going through a lot, too. Love from your cousins, Kelly and Eric X O
Posted by: Kelly Hostetter Thomas | June 07, 2011 at 04:43 AM
Sending lots of good wishes, hugs and prayers to you Tessa!! You are almost there!! Look at how much you've accomplished, I am proud to know you. Keep thinking good thoughts :>)
Love,
Cheryl
Posted by: Cheryl Knopf | June 07, 2011 at 04:24 AM
tessa, i'm so glad you are at the end of this long ordeal. my very best thoughts will be with you!
Posted by: nancy | June 07, 2011 at 01:15 AM