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!

Tomorrow!!!

Wow, lots of excitement around here lately! In case you missed it, Jack's charity was on the local news stations Monday night and Tuesday morning. We are all really excited to watch this little idea turn into something real! If you want links, I'll put some up on that blog,



http://www.littlehandsmakeabigdifference.blogspot.com/



Tomorrow Jack gets his fixator removed. Wow, after 3.5 months (112 days to be exact) it is coming off. Clearly, we are all excited....Jack is bouncing (literally, on one foot) off the walls. Jon and I are bracing ourselves for this next chapter, it's bound to be another round of celebrations and challenges. I can't believe how far Jack has come in 3.5 months. When I go back and read the blog entries from the first few weeks I can't believe what he made it through. We were told that this process is excruciating and will push you to your breaking point...I'll definitely agree with that! We've put those days behind us, but Jon and I will never forget those feelings of terror and helplessness. It changes your perspective in life....for the good, and for that I am very thankful!



Tomorrow is going to be a big day for all of us, so please keep us in your thoughts and prayers. We hope that all goes well with the fixator removal and that Jack is able to manage the pain and the shock of having it off.



We will keep you posted, but until then....have a great day!

Editing...just got a call from Rush. His OR time is 7:45, we have to be there by 6:15. We have to leave our house around 4:30. Mom, if you're reading this....you're going to have to get up reeeeeeealy early tomorrow! Sorry!