Sunday, April 12, 2009

Background

Hello and welcome to our family blog!

Jon, Jack, and I are starting this blog for several reasons. We're hoping to keep people updated about Jack's progress through his leg-lengthening process. I'm assuming it's going to be difficult to return every phone call and email, so we thought this would be a nice way to keep everyone posted. We're also hoping to educate and inform other individuals and their families facing this process. We have connected with a few families and the knowledge they have passed on is priceless. So, we're also hoping to pay it forward by sharing our story in hopes that it can ease another's journey through this process.

Jack is going to be a big part of writing this blog. It's about him and his body. Jon and I have always been very cautious about what we tell and to whom we tell things about Jack's health. It is his body and it's personal. Just because he's a little kid doesn't make it right for everyone to know everything about his body. We never wanted people to think of him as "Jack, the kid with......". So, we've made it a point to be very private about his health issues. Obviously, the leg discrepancy everyone can see and knows it's there. I had a conversation with Jack about starting this blog. I let him know it would be on the internet and everyone would be able to read it and see the pictures and videos of him as he goes through this. He completely understands and likes the idea. I think he feels like some sort of rock star. He came up with the name (jackthecoolkid), I thought it was perfect so we went with it.


Jack is scheduled to have a leg lengthening procedure on May 15th. For more information on the process, visit http://www.limblengthening.com/ Please continue to visit our blog, as we plan on updating it often throughout the next few months. Jack currently has a leg length discrepancy of 6 cm, our goal is to lengthen 3 centimeters. This will take approximately 5-6 months. He will be having his surgery at Rush University, and we hope to be home from the hospital within 3 days. He will be under the care of Dr. Kogan and his PT Nicki. We'll be having PT several times a week and also pool therapy once a week.

Very briefly, Jack was born with several health concerns. He has never been diagnosed as having a syndrome, so I've affectionately named it "Just Jack". We decided early on that we were not going to let this syndrome define who Jack is, rather it is just a small part of him. We never wanted Jack to be thought of as disabled or handicapped. We have yet to find something that he CAN'T do, he brilliantly adapts most things himself. Jon and I try really hard not to get caught up in the stress of things. We try to get all the information, go to the appointments, make a decision, and not look back. So far, it's worked out well for us to do things that way, so I think we're going to stick with it!
OK, enough about that....on to the fun stuff. Jack is a very bright, creative, funny, social kid. He loves to ride his bike, swim, color, read, and play video games. He has 2 great loves in his life, his mom and his baby sister, Mia. His plan is to marry his sister and let his mom move in with them. :) I don't have the heart to tell him it isn't going to work out that way. He loves legoes, dinosaurs, the solar system, Star Wars, High School Musical (really, he does!), and Junie B. Jones books. When he grows up, he wants to be an astronaut, a palentologist, and a marine biologist. He LOVES dolphins, and dreams of swimming with dolphins someday. Jack is quite the entertainer and usually doesn't shy away from being the center of attention.


Here is a picture of Jack on his first day of kindergarten that shows his LLD (leg length discrepancy) well.



Here is a picture of Jack that shows his personality well.



I know this blog is called "Just Jack" but in reality, it isn't just Jack in our house! Max is going to be 4 this June. He is tender-hearted kid, but can also be quite the character. Like his brother, his interests range from Star Wars to High School Musical. He loves sports and is a die-hard fan of whatever team his dad is cheering for. He's excited to play t-ball this summer, but still assures me that he's going to be a soccer player when he grows up. Max has an incredible imagination, I love listening to him play make-believe. Jack and Max are great brothers. They play together so well, as long as Jack is the one in charge :) Luckily, Max is happy with that arrangement.















And last, but not least...we have Amelia (AKA Mia). She is 8 months old and runs the show around here. Her brothers adore her and she loves them just as much.







And that's our family! Jon and I are very proud of all of our kids. Each of them is unique in their own ways and each of them brings lots of laughter to our home!



We hope that you visit our blog often, and we ask that you keep all of us in your prayers.



2 comments:

  1. i am always thinking of you guys-of course. even if we never see each other again (which won't happen) i could never stop thinking about each and every one of you. but i wanted to let you know that i will be praying for you guys with this upcoming surgery. if you don't mind i would love to ask others to pray as i firmly believe in the power of prayer. i know that this time is a bit scary because of the uncertainty of it all-but i am also excited because this surgery seems like it is going to be very beneficial. wish we could be there to help you more-let me know if there is something i can send to jack that he could use during this time. i love the pic of jack on the bouncy slide-that totally does represent jack's personality-he is so full of life and his love of life is contagious! i miss that kid. give him lots of hugs from the kuester fam. we love you all!

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  2. I know you know that we are all here for you, Jon, and the kids and will do anything we can to help out. Jack is sooooo special to all of us. He is such a tough kid and even though the anxiety is building, consider it a good thing that he is able to verbalize it all with you. You and Jon are awesome parents and Jack is so blessed to have you both. Hang in there! Think positive! We are here for you guys so please call if you want to talk, cry, laugh, hang out, shop :), or whatever!! We love you guys!

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