HaPpY BiRtHdAy Jack!!!!

OK, so I'm not winning any "blogger of the year" awards! It has been ages since I have udpated, so my apologies! And, I further apologize, because the spacing of the first half of this blog post is all messed up. There are paragraphs, I promise this isn't a stream of consciousness here!!! I just can't get them to space out properly. We are all doing well. We have been busy with school, work, and kids' activities. The boys are doing great in school, and we are so pleased with the progress they are making. Max is now reading and Jack is busy working on fractions and his research project on Mt. Kilimanjaro. Mia starts preschool in the fall, and is so excited. She gets to visit her future classroom when we pick the boys up from school, which is a huge treat for her. The boys are both working with a swim coach. Jack has made incredible progress this year, I think he is going to shock himself when swim competitions begin. His swim coach is amazing, she is as dedicated as Jack is to him competing against able-bodied swimmers. She has helped him to overcome the challenges that his body presents and the 2 of them are quite the team! Max will be joining the swim team this summer as well, and we are all excited to see him compete. He is quite the swimmer for a 5 year old, it is very natural for him. And Mia, well, she just likes to splash in the shallow end in her pink 'kini. Jack is still doing yoga once a week. This is so good for him, the stretching and lengthening of those core muscles helps to keep him strong. He often will take a break when he has some back pain and do a few yoga moves for relief. It's very cool that he has those tools to help him! He is also working with a personal trainer to keep that core and upper body strong. I believe his latest bench record was 70 pounds....pretty impressive for a 52 pound boy! He loves his personal training sessions, he has quite the friendship with his trainer. And, he still has his weekly massage/reiki therapy appointment. It's a well-deserved relaxation and pain relief session for him! We feel like he is such a blessed little boy! His team is amazing, his doctor, swim coach, yoga instructor, personal trainer, and massage therapist all provide something different, yet they are all equally important to keeping Jack strong. Without them, he'd never be able to do all the fabulous things in life that he can do, like this, for instance.......

:) OK, so that was a little joke. He does much more amazing things than stand on his head! On March 19th, we celebrated Jack's 8th birthday!!!

All he wanted for his birthday was an accoustic guitar. Here he is playing for his adoring fans.

The kids had spring break the last week of March. Jack had a doctor's appointment with his orthopedic surgeon, Dr. Kogan, and Jon had the week off. So, we decided to take a few days and spend them in the city! Mia got a trip to the American Girl store, the boys were very excited for her!

We spent a few hours at the lego store on Michigan Avenue.

And then, a wild time was had by all with a game of Headbanz back at the hotel.

We went to the aquarium. Just a tip, it is worth your efforts to get to the aquarium early on Sunday mornings. We were the first people in the oceanarium and had the entire underwater viewing to ourselves. It was amazing, just us and the amazing dolphins and Beluga whales. They put on quite the show for us!

And then, a trip to LegoLand.

As I mentioned, we had an appointment with Dr. Kogan, who is an amazing doctor and an incredible person. WE LOVE HER!!!! She told Jack she keeps pictures of him in her office and she even wrote a letter to Oprah about him.

She was blown away with how well Jack is doing. His leg xray is incredible, there is no visible evidence that he ever had those bones lengthened. Amazing! I personally think it's all those vitamins I pump into him :) Currently, his left leg is still a little shorter than his right leg. He wears a small shoe lift on his left shoe, but he still has problems keeping himself even. He has a tendency to stand on his right foot and sort of let his left leg dangle. He has been struggling with back pain for a while now (this most likely will be a life-long struggle). His extremely crooked s-shaped spine and his deformed pelvis along with the leg discrepancy contributes to the back pain. So, Dr. Kogan thinks that we need to do something to further eliminate the leg length discrepancy. She gave us 2 options. 1. Lengthen the femur on the left leg. This would be an external fixator on the femur and one on his hip to protect the deformed part of his hip. 2. Stunt the growth of the right leg.

We can't bear the thought of option #1. I honestly think that Jack is just now finally over the emotional truama of his first lengthening. When he heard her say the word surgery, the look on his face broke my heart. Besides, the risk of doing something to his hip during a femoral lengthening is a risk we aren't willing to take. So, we decided we are not doing another lengthening, we will go for option #2, stunting the right leg.

This basically involves putting a plate (or screws, or something!?!?!?) into the growth plate of the right femur. That bone will not grow until the plate is removed. Meanwhile, the left leg will grow and "catch up" to the right leg. The surgery itself seems pretty straightforward, and I believe it is either an outpaitent or minimal hospital stay. Recovery can be anywhere from 2 days to 2 weeks, it varies on the kid. I don't believe there are limitations once he is recovered. Once the discrepancy is gone, the plate (or screws?!?!) get removed. I think that timeframe is usually about a year.

Jack took the news well. His first reaction was, "am I going to have another wrecked summer?" Dr. Kogan agreed with us that it would be cruel to do this to him over the summer (swim season, beach vacation, etc). She said we have time to think about it, we could do it this week or it could wait a while. Right now we are considering at the end of the summer or over Thanksgiving. The timing will be tricky for us with all of us working and/or in school. But, we will make it work. Jack is excited because he will finally get to wear Crocs without any troubles. That kid can ALWAYS find the silver lining!!!!

It is hard to think we have to go through another process, but it feels like the right thing to do. It is still hard for him to walk any sort of distance, a trip to the mall, zoo, etc is impossible for him. He has no endurance because he has to work so hard just to walk. He used a wheelchair quite a bit when we were in Chicago and he seems very content to do so. We are happy with that too, it is so hard to see him struggle and be uncomfortable just trying to walk through IKEA. And personally, I think he loves doing wheelchair tricks and racing ahead of us throughout the store.

Jack told us that in school they wrote an autobiography. He had things that he wanted to write about, but I think he was a little embarassed to put them in, so at home he started his own autobiography last night. He says things like, "When I was born, the doctors took me away from my mommy and she didn't get to see me for a long time. My story begins there...." He told me he wanted to write about his surgeries and what makes him unique. I really think he's starting to sort out how he feels about his body and process all he has been through. We were telling him about how when he was 6 weeks old, he had an MRI because the doctors thought something was seriously wrong with him and we weren't sure if he would live a healthy, normal life. He definitely was processing that thought and kept saying, "Really? Me? But, I'm a rockstar!" I laughed and told him, he's really a sweet boy living a normal life, which 8 years ago I was afraid to dream of. So, I guess he's right.....living beyond what I could have dreamed for does make him a rockstar!

Can I brag for a moment?

A combination of innovation, technology, persistance, and a lot of hard work......

First day of school, Jack is in 2nd grade!!!!

Max joins his big brother this year, as he heads off to kindergarten!

Making progress!

We've been so busy this summer that I haven't taken the time to update. I thought I'd hop on here quick and catch everyone up!


Our summer is going great, but we are all looking forward to school starting back up in a few weeks. Jack joined the swim team this summer and loved it. He did amazingly well, being a one-legged swimmer :) He did relays, freestyle, backstroke, and breaststroke. He is going to continue with swimming and work with a swim coach once a week. It's really the perfect exercise for him, no impact, lengthens and elongates the entire body, and he enjoys it!


The fierce competitor.






Waiting for his turn to dive in as the anchor for the freestyle relay.

We are still doing therapy at home with the "zap" machine three times a week. The progress he's made is very encouraging, his limping has improved so much. Jamie, Jack's uncle and therapist, came up with a new orthotic for Jack to wear to address his foot issue (his foot is still stuck in the "point your toes" position). The boot forces his foot into the normal "flat foot" position. It's amazing how flat his foot can get once he takes the boot off. We're hoping with time, those mucles/tendons/ligamonts stay stretched out and he can keep that foot flat all the time. For now, we are thrilled with the progress we see.

Here's Jack, doing double-duty, wearing the boot and side-laying on a lumbar roll to stretch his back out. Clearly, he's ecstatic about it all :)

We were lucky enough to take a week and go to the beautiful Kure beach in NC. We had a blast, enjoyed our beach house and didn't do much besides swim, sand, and sun! All the kids loved swimming far out into the water and riding the waves back in, building sandcastles, and enjoying a nice slow paced week.

Jack, hard at work, building a castle.

Trying to get a picture of the 3 of them is virtually impossible, but this picture was definitely my favorite!

MRI results

Just a quick update to let everyone know the MRI results looked good. We're very relieved about that! We'll keep you updated on where we're going from here....

Update!

We went to see Dr. Kogan last Thursday. Jack was so excited to see her and show her the progress he has made in the last 6 months. Dr. Kogan was thrilled to see how far he has come and was intrigued about the new therapy he has been doing. He had xrays of his leg and everything looked perfect. The only signs that a lengthening had ever been done was little spots where a few pins were!

Because Jack has congenital scoliosis, we had to do routine spinal xrays. He has been complaining about back pain the last couple of months, so we were curious to see what the xrays would give us any answers. The first round of xrays Jack was standing on a block (to level the hips). The xrays did not look good, his curves had progressed since his last scoli xrays in October. We were very disheartened to see this and could tell Dr. Kogan was disapointed as well. She suggested that we get an MRI to check for tethered cord and to consult with a spinal specialist. Jon asked if we could repeat the xrays with Jack laying down. His last round of films were done laying down, so to compare these new xrays with those was difficult. So, we repeated with Jack laying down and those films looked better. That was a little bit of a relief, but the question now is....which films are the reality??? The laying down xrays are not an accurate representation of what the spine really looks like, but the positioning of the standing xrays isn't a complete picture either. He's probably somewhere in between, which means the curves have progressed some. Bummer.

He is scheduled this Wednesday to have an MRI to check for tethered spinal cord, which is basically when tissue attachments within the spinal column limit the movement of the spinal cord. The attachments can stretch the spinal cord, which interferes with the function of the nerves. If we do find out that Jack has tethered cord, there is a release surgery that a neurosurgeon can do to fix it, which will alleviate the back pain and potentially stop the progression of the scoliosis curves.

Based on the results of the MRI, we will be consulting with a spinal specialist. Jack has seen several in the past (one in Chicago, one in Memphis, and one in Boston). At this point we're waiting on MRI results before we decide what to do next.

So, we appreciate any prayers, good thoughts, or well wishes this week. Jack will be sedated for the MRI, which is always a stress.

Beyond our bad news from the appointment, this summer has been going great. Jack joined the swim team at the gym that we belong to. He is working SO hard to learn all the strokes, diving, and breathing. We are so proud of our little one-legged swimmer, he competed in 2 races last week. His goal was to finish the races and he reached his goal!

Perfecting the belly flop.

We never question his enthusiasm.

One benefit to a lower limb deformity...freakishly strange upper body strength.

He's still riding horses once week. He loves his horses!

One Year Mark

May 15th, 2009

May 15th, 2010

Celebratory ice cream

Look mom, no hands!!!!

Watch out, Mia!

Pin sites, one year later. This first one is the site that we battled infection after infection. There is a large divot into his leg. Jack thinks it's totally awesome. The scars are actually much more purple colored than it shows in the pictures.

WOW!!!!!!

Dolphins and therapy!

Some of you may remember way back when Jack agreed to have this surgery, there was a deal made. If he went through the surgery, we would take him to swim with dolphins. Well, obviously, Jack held up his end of the bargain, so a few weeks ago.....we did this:

We also spent a week in Disney world, which really truly is a magical place. We had so much fun, we rode alllllllll the rides, saw shows, parades, met characters. I think all 5 of us had the time of our life!

This is Jack, right before riding his first big rollercoaster.

Once we got home, we got back to work. We were approached with an idea from my brother-in-law (a PT) about a therapy he thought would work for Jack. Of course, we immediately agreed to try it, we trust Jamie's opinion 100% and Jack has sort of plateaued in his gait progression. The new therapy is an acornym called PENS, this stands for something important and medical, but I can't remember what :) I KNOW I am not totally accurate here, but the gist of it is this....we put these electrodes on Jack's muscles (quad and hamstring) and this machine uses some wavelength to contract the muscle in a triphasic pattern (quad, hamstring, quad, quad, hamstring, quad). This pattern is the normal muscle pattern when one walks. Because Jack has always limped and never walked in this pattern, we are introducing the concept to his nervous system. Initially, we are hoping to build strength in those muscles, and as time goes on hoping to retrain his nervous system and brain to walk in that triphasic pattern. Following the "zapping session" (as we refer to it) we do all these strength exercises with a weight on his left ankle. We do this 3 times a week.....we've been doing it for 2 weeks now and dare I say....we are cautiously optimistic that we are seeing progress already!!!!

Jack has been using this extra 30 minutes three times a week "zapping time" to kick back, relax, and read. I'm proud to say he is zipping through the Magic Treehouse Series very quickly. I'm thinking once summer is here we'll switch to a new series, I think he's hoping for something like Captain Underpants. :)

So, that's where we are for now. The one-year mark is approaching in May, hard to believe it's been a year! I joke that Jack is going to have stories when he's older that his wife and kids won't believe.....screws sticking out of his leg bones, his parents turning bolts to make his leg grow, his uncle hooking up to electrodes to zap him. It makes for a great story! :)