Tuesday, April 5, 2011

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!


  1. Great pics and update, better late than never!

  2. Heidi what a great update! I'm sorry Jack has to go through another surgery but I'm glad it's not another huge one. I love that he's writing his own autobiography. It's a great way for him to get down his thoughts.
    I love the photo of Jack, Max and Mia at American Girl.