Who would have thought???

First of all...to all of my followers...LOVE YOU! It is very neat to think that *I* have followers.

Because of the fixator that Jack will be wearing, we have been having to adapt clothing for him. All of his shorts, pants, underwear, bathing suits, pajama pants need to be altered in order to get them on him. Once I realized this, I sort of went into a panic, as I have no sewing ability. Fortunately for me, I have very generous friends that offered to adapt clothing for us. These 2 women are amazing people....I mentioned adapting the clothing, they both shot me an email offering to help and within days the clothes that I sent them were done! So....Jeannie from RI and Drea from Canada...you are the BEST!

I got a package yesterday from Jeannie that had some shorts and underwear that she had adapted for us. I debated all day showing them to Jack and finally tonight I figured he needed to see them. So, I call him upstairs and say "Jack I don't want you to freak out, but this is what you're going to have to wear after you have surgery." I show him the underwear and the look on his face was priceless. You would have thought it was Christmas morning. He thought they were HILARIOUS. He said, and I kid you not...."mommy, I am EXCITED for my surgery now if I get to wear these underwear afterwards."

Seriously???? Hey, I'll take it...but, seriously???? That's all it took....a few pairs of underwear?!?!

Good Question Buddy

We all seem to have this looming surgery on the mind. It's very frustrating because I am constantly thinking about it...the recovery, how the little kids will do without Jon and I for a few days, transportation afterwards, etc etc etc. Last night at dinner we had this conversation:

Jack: Mommy, I can't stop thinking about my surgery.
Me: You need to find something to do to keep your mind off of it.
Jack: I know, but even when I play legoes, I'm thinking about it.
Me: Jack the surgery is going to happen whether you worry about it for the next 2.5 weeks or whether you don't worry. So, you really should just stop thinking about it.
Jack: I know. But how do I do that?

Good question buddy, wish I had the answer.

Processing what's coming up

Jack has been struggling the last couple of weeks with preparing for his surgery. I have been completely honest with him about what is going to happen, the pain involved, the hospital stay, and what he's going to wear for months afterwards. I'm not going to sugar-coat what he's going to go through. He's a smart kid and I don't want him to resent me afterwards for telling him, "it's just going to pinch a little." It's going to hurt like heck, so I told him that.

Years ago, Jon and I watched the movie, "Little Miss Sunshine." Great movie, I highly recommend it. Anyway, in the movie, the mom calls them a "pro-honestly family" and they are. Jon and I thought that was a great idea and like to think of ourselves as "pro-honesty". We try to make the truth kid-friendly, but we always tell the truth. The few things we do lie about are the Easter Bunny, tooth fairy, and Santa. I plan on lying to them about Santa until they are 16.

So, anyway...he knows what's coming. He's scared and very anxious. Most nights at bedtime, he tells me he's been thinking of his surgery all day. Of course, this breaks my heart...but I understand, it's always on my mind too. I have been asking him what he wants me to do...does he want me to tell him things to make him better? or, does he want me to lay there with him and be sad too? Sometimes he wants me to make him feel better...I'll tell him he's very brave, mommy and daddy will be there the whole time, I think he's going to do great, I'm very proud to be his mommy, and when it's all over, we'll all be very happy he did it.

It's very hard to watch him struggle, but we are very relieved that he's mature enough to recognize his feelings and verbalize them.

We promised Jack that when this was over with, we would take a family vacation anywhere he wanted to go. It has been very amusing to watch him make this big decision. First, he wanted to go to Hawaii after watching an episode of Jon and Kate plus 8. Then, he wanted to go to Mexico to swim with dolphins (his dream!) He's finally decided on Disney World with a day trip to Discovery Cove http://discoverycove.com/DCO2/ I'm not sure who is more excited about the trip, Jack or us!

Stop Staring Please

Those of you that know me well, know that I have a HUGE pet peeve....staring. There is no way to discreetly stare at someone...if you're staring, they know it. You can FEEL someone staring at you, even if you are in a crowded mall with thousands of people and there is one person staring at you, you can feel it. And it hurts. Jack deals with staring every single day. He hates it and talks about it all the time. He can not wait for this lengthening to be over, his shoe lift to be less noticeable, and maybe the staring will lesson.

My sister gave me the idea of handing out cards to people that can't look away. Something along the lines of "Hi, my name is Jack. I am wearing this on my leg to correct a leg deformity that I was born with. I am trying really hard to be brave, and I get very upset when people stare at me. I know this is very interesting looking, so if you would like more information please visit www.limblengthening.com"

I mentioned this to some friends, and they got creative and came up with some ideas to have printed on tshirts or cards. I thought I would share them with you:

"Don't mess with me, I'm in training to be the next Bionic Man!"

"Staring causes paralysis. "

"You should see what the other guy looks like."

"Give me your number. When this thing comes off I'm gonna throw it at ya."

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.