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.

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!

Trucking along

Jack is doing well. He's working hard at therapy and showing improvements everyday. One thing we've noticed is that his gait is so much better after he's been stretched/massaged. He gets really tight and his limp worsens. So, we've been trying to do as much stretching and massaging as we can. I will say he's enjoying that :)

Here's a video of him walking today, it's a remarkable improvement!

Here's a couple of pictures from the Dells. As you can see, the boys had the time of their lives! They kept asking if we could move there. We had the park to ourselves and the boys and I did the water slides until my arms were so sore I couldn't carry Jack up the stairs to get to the top of the slide!

GREATEST invention ever. A baby swing suspended over the water. She loved it!

The boys started horseback riding lessons a few weeks ago. They love it. Their instructor said they were doing a great job, apparently horseback riding is a lot of work. They love it so much, they don't realize that part!

Max riding Red.

Jack, riding Red.

That's it for now! Will keep you posted!

We have a brace! And shoes!

After five trips to the orthotist (in six days) we finally have a brace and shoes that work. Not great, but they're functional.

The biggest challenge right now is Jack's knee is slightly contractured (bent) and his foot is slightly in plantar flexion (pointed). He's basically forced to walk slightly tip-toed on a bent knee. The therapists all agreed they did not want a brace/shoe combo that would flatten his foot out, that prevents the stretching that he needs in order to correct the problem. Unfortunately, it hurts for him to walk....which is a huge disapointment for all of us. We are hoping and praying that those mucles, tendons, and ligaments stretch soon! The PTs told us they hoped by the spring everything will be resolved....I can't bear to think of months of this, so I'm hoping by Christmas! I was worried that Jack would be disapointed that he needed a lift, but by the time we got everything figured out he was so tired of being at the orthotist's office that he didn't care what we were leaving with...he just wanted to leave! He is very frustrated with the discomfort and the limping (the limp is really bad, worse than before the lengthening). He told me yesterday when he grows up he's going to invent something that makes people flexible and muscles stretch. I think after all this kid has gone through, he just may grow and create world peace. We can hope, right? :)

Here's the shoe and brace.

And here's a video of him walking. We're going to to take weekly videos so that when this is all over we can watch the progression of his gait.

So that's where we are for now. A lot of hard work in the future, but he'll do it. The hardest part is behind us, I keep telling myself. We're looking forward to this weekend. Jon has a conference in the Wisconsin Dells and the kids and I are tagging along. We're looking forward to the Kalahari water park slides and Jack claims he'll be in the hot tub most of the time. What a nut.

Sneakers...coming soon!!

Jack is doing well. He is walking and running (and playing soccer!) on his leg. How he is doing that with that ridiculous brace is beyond me, but he's doing it. We've been strapping a sandal onto the brace and he's doing the best he can on it. Tomorrow we get to pick up his NEW FUNCTIONAL brace!!!!! We are all so excited. We're planning on sneaker shopping this weekend and then we have to go back to the orthotist with the brace and sneaker next week to see what's the best way to add a lift (onto the brace or onto the sneaker). So hopefully by this time next week, he's in a fully functional brace/sneaker combo!

The infection has healed. It was a real nasty one, and we were thrilled to see it gone. At aqua therapy on Monday, Jack was able to go into the hot tub (after 5 long months of watching the other kids wistfully). It was definitely the highlight of his week! Therapy is going well, it's a little challenging right now because the brace is so non-functional, but he really resists walking without it on. Nicki (the PT) has been doing lots of new stretching to address the muscle tightness in his calf muscle and his hips. Hopefully she can get those muscles loosened up and the contracture/tightness in his knee will go away.

The real exciting news around here is that the boys start horseback riding lessons today! We've debated putting Jack in therapeutic horseback riding for years. We recently revisited that idea and decided that he's in so much therapy already, let's do regular horseback riding lessons! We found a place that starts at age 4, so Max gets to go as well. They are so excited, I can't wait to watch them!

Here's some recent pictures. This was the first day he wore pants. He was so excited about looking like he had 2 equal-lengthed legs.

Cooperating for me.

Not cooperating for me.

Amelia started walking a few days after Jack had his cast off and he started walking. This is so funny because we've been saying since June that it was a contest between them who would walk first. I think it was very sweet of her to let her big brother win :)

She's also an ace at climbing. I'm thrilled about that.

And that's it for now. I know our updates aren't nearly as exciting as they used to be, so I appreciate you still checking in with us!

Freedom!!!!

Jack got his cast off yesterday. I was hoping it would be a fun occasion, it was more of a traumatizing experience. Jack has developed a bit of a sensory issue with his leg...meaning, he doesn't want anyone touching it. So you could imagine that a saw-bearing-stranger might cause a little bit of fear. He pretty much screamed his way through the cast removal, xrays, and the fitting for his new brace. It's so hard for me to see him acting like that, it is SO out of character for him and it's a tough reminder of all that he went through....memories of the days spent with him screaming came rushing back. Needless to say, we were all relived when we got out of there!

The good news is the xrays look great! We had a hard time distinguishing what is new bone and what was old bone. Dr. Kogan was thrilled with the results. We also did xrays of his spine and all looks great there (huge huge huge sigh of relief there).

Here's the leg xray. The black spots in his bone are where the pins were. Over time those will fill in with new hard bone.

For the most part, the pin sites healed pretty well. I will say I am VERY glad he's a boy because I have a feeling a little girl might be upset about the way it looks. One of the pin sites is very infected, which we were surprised to see. He's on an oral antibiotic and we're swabbing it with iodine for a couple of days to try to clear it up.

It's hard to see in this picture, but the pin sites are reddish-purple scars that are sort of pitted into his leg. The infected pin is the bottom of his leg....the red, angry looking sore.

We are not happy with the new brace. I'm not sure who's idea it was to make it the way that they did, but it's not going to work. First of all it's not hinged, so he won't be able to walk/ride bikes/etc with it. For some reason, they built up the heel to compensate for a slight knee contracture he's developed. It's like a high heeled brace, totally ridiculous! We can't even put a shoe over it. So, we're going to talk with his therapists next week and get their recommendations for what he should have. Then we'll get a new brace made. We'll have to make this one work until we get a new one.

Here's the new brace...soon to be the old brace.

Jack is definitely very hesitant to walk or put much pressure on that leg. We've learned that it's best to not put any pressure on him and let him move at his own pace. He went swimming last night, and was hesitant to get in the pool, but once he was in he was swimming and kicking with both legs.

It's amazing to think that we're at this point in the lengthening process. I'm glad we did it, but can't say I'd be thrilled if we had to do it again! Jack is home with me today so that I can keep an eye on that infection. We were watching Good Morning America and there was a segment on Perthes disease (a degenerative hip disease in little kids). They covered a little boy that had surgery and intense therapy as a result of Perthes, and the reporter (Cameron Mathison) had overcome Perthes disease as a child. Cameron said that as a result of his struggle with Perthes he was determined and hard-working. As a kid, he learned what really is important and came out of his ordeal working harder than everyone else. I explained to Jack, it' doesn't matter who is the fastest runner, but rather who is the runner that's trying the hardest. I am so thankful that Jack and I got to watch the segment together.

http://abcnews.go.com/GMA/cameron-mathison-discovers-advances-treating-perthes/story?id=8661751

Jack is definitely enjoying his new freedom! He's let me rub his leg gently and last night we gave it a good (but gentle) scrub in the shower. This morning, he keeps telling me how good it feels to reach down and not have pins or a cast on! Last night he said, "I don't feel like I've one victory, I feel like a hundred thousand victories!" I had to agree :)

Big Day!

Tomorrow we go see Dr. Kogan to get Jack's cast off! It's hard to believe we're at that point in this process. We're all excited for the big reveal, and to see what that little leg looks like now that it's 5.5 cm longer. I am looking forward to getting him in a bathtub and scrubbing the leg, while Jack is looking forward to jumping in the pool! He's got plans for us to stop at Woodfield mall on the way home to get some new sneakers. It works out nicely since we are stopping at the Build a Bear on the way home to build over 30 stuffed animals to donate!

Jack wore pants the other day and it was so strange because we didn't have to cuff the pant leg of his left leg. Jack told me, "mom, if I didn't have my cast on, nobody would ever know that leg was different." I was so happy for him, he has gone through SO much these past few months, and he was basking in the results of his hard work.

Once the cast is off, he'll get a new brace to wear. PT will be focusing on improving his gait/limp and increasing his strength. He'll still see his therapists three times a week and his massage therapist once a week (lucky kid)!

So, that's where we are this week. In the last couple of weeks we've really seen Jack let go of a lot of the stress and burdens he carried over the last few months. He really seems to back to himself. The lengthening process was a physical and emotional process that we'll always feel very triumphant that we overcame!

And here's a quick picture because Jack pointed outI had not yet posted a picture of him riding his scooter. Apparently he likes the idea of people marveling over his many talents :)

Prayer request

All is going well here. Jack is doing great in his cast...walking, riding bikes and scooters. His aqua therapist asked me the other day, "is there anything he won't try to do?" I'm always thrilled when he's impressing his therapists, especially the veteran ones!


Walking the maze at the apple orchard. He looks very serious because he was concentrating.







Freedom never felt so good!



Look at that determined face.





Riding up the hill.





And some face time for little brother and sister!




Someone asked me if I'm excited for Jack to get his cast off...um, no! I would love to keep it on for a few more months! There is a big risk of fracture in the new bone until it is fully hardened, which takes time. While I LOVE that Jack is walking and bike-riding, I would like to put him in a bubble once the cast comes off, until at least the end of the year! I'm sure that would go over well with him.


We went out for dinner on Saturday and as we were leaving I heard Jack say to my dad, "I want to see her brace." I look over and see a teenage girl with a fixator on her leg!!! Of course I had to go over and say hi to her. Hers was different, more of a rod along her leg than the halos that Jack had. But, it was so neat for Jack to be able to talk to someone else that understands. Of course, my heart lurched when she said her pins were very painful and she knew she'd have trouble sleeping that night. She's a trooper though!


I started this blog months ago in hopes of connecting with other people in similar situations. We were lucky that we found another family that was undergoing a lengthening this summer as well. Yesterday, I got an email from Kelly (the mom) asking me to share their story with Jack's support team. Emma Grace had a leg length discrepancy as a result of a MRSA infection in her growth plates from birth. In July, at 3 years old, brave Emma Grace had surgery to begin her leg lengthening. After her surgery, Emma Grace battled seizures (due to high fever), many infections, and eventually caught the swine flu. We are heart-broken to tell you that Emma Grace passed away this week due to complications from her lengthening. We ask that ALL of our readers and supporters extend their prayers and healing thoughts to Emma Grace's parents, Kelly and Ryan, and her sweet baby sister, Estelle. Kelly and I were there for one another during those months of anticipation so it is important to me that we do what Kelly has asked...spreading Emma Grace's story of heroism and bravery. I know I will always hold a special place in my heart for Emma Grace, a little hero with a hairbow.

Quick update

Just wanted to hop on and let everyone know how things are going. Jack is doing great. He never had any pain, so I think the pin sites are healing well.

He was really resisting trying any walking on Friday and Saturday. Sunday, we were at my parents house and he was playing with an old cane of my grandfather. I taught him how to use the cane and he was walking around with it. I mentioned to him that he didn't really need the cane, he was putting all his weight on his foot anyway. That was all the encouragement he needed....he took off walking and has been doing great since. He's trying really hard to not use his walker at home and in the classroom at school. His focus in therapy is increasing his strength and stamina. Once he gets the cast off and the brace on, his therapist can work on his gait. Speaking of the cast....he was supposed to wear it for 2 weeks, but with coordinating Jon's schedule with Dr. Kogan's schedule it will be on for 3 weeks. To be honest, I'm okay with it...the cast keeps that bone nice and protected!

So, that's all for now. It's still hard for us to believe that we made it to this point....but we did!!!!

It's over?!?!?!

Our day started really early, we left for the hospital at 4:30. Jack was pretty nervous last night, he was very worried about what the pin sites would look like and how they would be bandaged. He slept all the way to the hospital and woke up nervous and pretty edgy...understandably. Our check-in nurse was great. She is a swimmer, so she and Jack chatted swimming (he just started swimming in the deep-end by himself so was pretty excited to share that with her). We got him in his gown and headed up to the pre-op holding room. About that time, the tears started. By the time we were in pre-op he was pretty upset and he remaineed that way. He didn't want the fixator to come off. HUH?????? Dr. Kogan explained that this happens a lot, that kids adjust so well that it becomes their new normal and it's scary for them to think of another big change. Jon carried him back to the OR, Jack was so upset at this point. Long story short...they got him sedated, Jon and I went to the waiting room holding our little buzzer waiting for Dr. Kogan to call.

We waited all of 30 minutes before we got buzzed and he was done. Dr. Kogan said they were the best pin sites she's ever seen, so clean and small. She said they'll heal in no time. She bandaged them and casted him (for 2 weeks). They measured him for a brace that he'll wear once the cast comes off.

We met him in the post-op room. He woke up crying and I held up the fixator for him to see. He sat upright, whipped the blankets off of him, looks at his leg, grabs the fixator and starts turning screws and pins! He was SO excited that it was off and the ordeal is over! Can I just say.....OH MY GOODNESS....that fixator is SO heavy! Dr. Kogan knew of our plans to turn the fixator into something (a robot, chandalier, something...) so she cleaned off all screws and pins, and we have it all! It's very cool. He ate some popsicles, drank some water, and we were on our merry way. Dr. Kogan stopped by to see how he was doing. She started telling us when he's 9 she'd like to do a shortening procedure on his right leg to completely even his legs up. Jon and I looked at each other, thinking the same thing....that's 2 years from now, we'll worry about that then! Before we left he made sure to tell Dr. Kogan that his charity made it on tv. She wanted to see the footage, so Jon got his laptop out and showed her. She watched it and then got her residents and the nurses and watched it again. She also saw our vacation pictures on our blog and noticed the "Dr. Kogan said no handstands, but we let him do it anyway" pictures. She LOVED it, and said we have to bring her a blown up copy of it to hang in her office. And then she told us she loved him so much she wanted to take him home with her, and at that point we grabbed him and left :)

I know I talk about Dr. Kogan a lot, but here's the thing....we had to hand over Jack to Dr. Kogan and trust her to take care of him. At the scariest moments of his (and our) lives, we were powerless, fully trusting in her to keep him safe. Surgically, she did an amazing job. Emotionally, she took care of all of us through the last 4 months. We love her so much, and I think we're going to miss seeing her every other week! She gave me a big hug on our way out and told me, "you made it, you guys did it, it's over." I didn't really believe it until I heard her say it, but I believe it now!!!!!


Last picture with the fixator as we are checking in.



Holy cow...IT'S OFF!!!!



Popsicles for breakfast? Only in post-op.


Dr. Kogan autographing her work.



I have conquered the fixator!!!!!


Jon gave the boys the fixator and some tools. They took it all apart and played with the pieces. The BEST tinker toys ever!!!! Overheard while playing...."Max, this is the screws that were in my bones." "Really, did it hurt?" "Um, yeah." Things you never thought you'd hear.....



These are from yesterday. Handstands in the pool.


Jumping in!





We are definitely celebrating tonight with a yummy dinner...and an early bedtime. We are wiped out!