Thursday, December 31, 2009

Goodbye 2009...

This is the last update of 2009. Wow, what a year. I've debated how to wrap up this year of blogging and have gone from writing a recap of Jack's story starting from day 1 to a quick update of his last appointment. I scratched both of those and decided I'd pour a cup of coffee and sit down and type from the heart.

We saw Dr. Kogan last Wednesday. I would say that Jack's excitement to see her was slightly below his excitement to meet Santa's delivery on Christmas morning. He wanted to see Dr. Kogan and show off his progress from all this hard work these last 3 months. We saw her in the hallway as we were waiting for xrays and she came over to give out hugs to all. She said she couldn't wait to see him in the exam room, and wanted him to walk down the hall right away! So, off he went...biting his lower lip, concentrating, and trying to remember all that he's done in gain training in PT. Dr. Kogan was excited...thrilled....over the moon. I believe the words "World's most amazing kid" came out of her mouth. (And who am I to disagree with that???) Jack put on his Mr. Cool face, but I could tell inside he was dying with excitement.
We had xrays done and got into the exam room. We brought the old shoe to Dr. Kogan and did the side-by-side comparison. What else is there to say?


We made a book of Jack's journey through leg lengthening and showed it to Dr. Kogan. She took her time combing through it all, and we all could tell she was touched to see our side of the journey. We gave her a Christmas present, which was this:


She told us it was the best present she could ever receive. And we all believed her.

Dr. Kogan told us she was in Florida at the Limb Lengthening Institute observing a sugery. She said that several people said to her, "we know you and we know your patient Jack O'Neil." Apparently, our blog has traveled to this huge limb lengthening community down there. We are thrilled that people are finding it informative, useful, and hopefully comforting.

So...for those of you reading this that are facing a lengthening or in the midst of a lengthening, our thoughts and prayers are with you. This is a painful, challenging, heartbreaking journey to endure. You will have moments where you are angry that you have to endure this. You will have moments where you question everything. And you will have moments where you just can't take the pain anymore. But with time, you heal from those moments. And perhaps with more time you forget those moments. But, there are moments of greatness that live with you forever.



Dr. Kogan said to come back in 6 months. Six months seems an awful long time for a little kid to go without seeing his hero and for his parents to go without seeing their source of comfort and reassurance. I know Jack will keep working hard and I know there are many more moments of greatness to come from this kid.




Many people have asked me why I took the time to document this journey in such detail. The first months (and perhaps year) of Jack's life are a blur of doctor's appointments and surgeries. All I remember from Jack being born is hearing the word "defect" way too many times and being told all the things he may never do. I was so heartbroken, I couldn't bear to take pictures to document all the "defects" and I regret that so much. This is the one picture I have, that Jon took before I got to see Jack.

And no, that is not a bad camera angle...his leg was really bent like that.

Years have passed, and my little boy has done EVERYTHING that we were told he probably couldn't. He's proved everyone wrong, and he's done it with determination, grace, dignity, and lots of laughter. I am so proud of him that at times like this when I sit down and think about it, I understand the saying "bursting with pride." Jack, you've taught me more about life than I could ever wish to teach you.

To all the parents out there that are where I was six years ago....it's going to be okay. In fact, it's going to be great.

Happy 2009. Bring it on 2010.

Monday, December 14, 2009

Update

Oh my. It's been over a month since I've updated! How has that happened?!?! Overall, Jack is doing well. He's slowly making progress. It's hard for Jon and I to see it, but his PT and his massage therapist have both commented in the last week that they're noticing improvements. His foot is still not flat and touching the ground. We think the issue is coming from the knee, his foot (the drop) is looking much better. We just have to get that knee to straighten out!!!

His gait-training is proving to be a huge challenge. He does great at times, and at other times we literally cringe when we see him walk. He can walk really well at PT on the treadmill or balance beam. When he's in that controlled environment and slows down and concentrates, he looks great. But, he's a little boy, and slow isn't his style. It is proving to be quite difficult for us to convince him that he's got to work on it. Lately he's been resisting any encouragement we've given him, so we're laying off for a week. Once Christmas break gets here I am hoping to work with him at home on slowing down and walking deliberately and standing on TWO feet!!!!!

We see Dr. Kogan on December 23rd. We are looking forward to seeing her and getting some xrays done. I am really hoping that she's pleased with his progress and we can end 2009 on a good note.

I'll post a few recent pictures, as you can see we've been enjoying the snow!