Just Jack

HaPpY BiRtHdAy Jack!!!!

2011-04-05T08:45:00.001-07:00

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?

2010-08-30T09:30:00.001-07:00

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!

2010-08-05T06:36:00.000-07:00

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

2010-06-29T13:56:00.001-07:00

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!

2010-06-20T19:47:00.000-07:00

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

2010-05-16T18:26:00.000-07:00

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!

2010-04-23T08:47:00.001-07:00

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! :)

Happy "lucky #7" Birthday to our little Jack-pot!!!

2010-03-18T18:30:00.000-07:00

It’s been so long since I’ve updated! Take that as a good sign. Jack’s recovery is going well….he’s doing aqua PT, clinic PT, and massage therapy once a week. All his therapists are pleased with his progress and notice improvement weekly. He’s also doing swim lessons and horseback riding lessons once a week….these are not technically therapy, but he gets SO much therapeutic benefits from them and they are FUN. School is going great and his recent accomplishment was riding a 2-wheel bike again! So that’s our update….good, good, good things!

I could leave it at that, but tomorrow is a BIG day…Jack’s 7th birthday!!! My sister asked me yesterday if I “relive” the day my kids were born on their birthdays like she does. I was happy to hear that I’m not the only sentimental mom out there that does this, but I felt my tears begin to well up as I told her that reliving Jack’s birthday is somewhat like reliving a bad dream. So, his birthday is always a little hard for me…bittersweet, if you will. And since this blog is all about HIM, I thought I’d go waaaaay back in time to when this all began.

I was 20 weeks pregnant with Jack and at a routine ultrasound. The doctor came into the room after the ultrasound and told us there were some concerns with what they saw, a spinal and a kidney abnormality. They couldn’t give us details because it wasn’t clear what was wrong, it was just clear that all wasn’t right. They told us to come back in 4 weeks for another look. Four weeks later, they confirmed what they had told us prior, something indeed was wrong, but there weren’t enough clues to give us any concrete answers. They wanted us back in 4 weeks. This next time we saw a high risk specialist, he did the ultrasound himself. He told us that Jack had congenital scoliosis, a rare spinal defect in which the vertebrae do not form correctly. Normally, vertebrae are like cube-shaped blocks stacked on top of one another to form a straight tower. Some of Jack’s vertebrae were shaped correctly, but some were triangular-shaped, forming a wedge in his spinal tower and causing a curve. Other vertebrae were basically vertebral-fragments. Our little baby’s spine was sort of an S-shaped, curving one way and then curving back another way. The doctor told us we would have to see a pediatric orthopedic surgeon when Jack was born. He gave us the name of a doctor he recommended we consult with when the baby was born. Rather than waiting, we called that day. We talked to the surgeon’s assistant and she told us to come in at 7 am the next morning, he would see us before his clinic started. We went and we met Dr. Sawyer. He explained to us in detail what congenital scoliosis was and assured us he could help us and then he gave us the best gift any doctor could have ever given us….he told us, “If this were my baby and my pregnancy, I’d read a little about this to prepare myself, but then I’d relax and enjoy the pregnancy. Everything is going to be just fine.” So, we did just that.

I delivered Jack by c-section on March, 19th 2003. I immediately knew something was wrong, there was a very awkward moment when my doctor said, “your baby is almost here” and a second later I heard, “get the nursery on the phone now.” A nurse told me something is wrong with your baby, and when I asked what she couldn’t tell me. They gave me a quick peek at his face and took him away. I was taken to recovery and waited for hours for an update. Jon went with Jack and would come by to give me updates. All he could say is something is obviously wrong with his leg, and he has a lot of hair.

Here he is! No, it's not a bad camera angle...his leg was really bent like that. He had no flexion in his knee...so essentially his leg was stuck just like that. Unfortunately, we didn't take any pictures of him where he wasn't covered with a blanket, so this is the ONLY "before" picture we have.

I was eventually taken to a room, and that evening Jack was brought to me. At this point we still had no answers as to what was wrong with him, but the nursery determined he was stable enough to be with us. I remembered being how shocked at how beautiful he was (he really did have a lot of hair!). I unswaddled him briefly and took a quick peek at his foot and leg. I was shocked and I remember thinking “how can someone live life with a leg like this?” And then I bundled him back up and went numb.

Here is me meeting Jack for the first time. Don't mind my red nose...in the midst of all of this, I had an allergic reaction to the morphine! I can laugh about that now too.....

He really did have a lot of hair!!!

The next few days were a blur, although I can remember exactly what each doctor said to me. First we saw an orthopedic surgeon (it wasn’t Dr. Sawyer, he was on vacation). The surgeon told us he’d seen babies like this before and the spine almost always gets worse as the baby grows and most likely, at 6 months of age he’d fuse Jack’s spine from top to bottom…..meaning he’d live the rest of his life with the trunk height and thoracic cavity of a 6 year old. I couldn’t even wrap my mind around that so I pushed that idea so far back into my head that it never entered my thoughts again. Jack also was diagnosed with a club foot, and congenital hip dysplasia (his leg bone wasn’t in his hip socket…on either side). We were told treatment for both of those would start in a few days and involve casting and bracing. Next was a cardiologist, they had found that Jack has a heart defect called a VSD….basically a hole in the walls of his heart between the left and right ventricle. She told us his body had started healing the hole before he was born and it was small enough that he was stable with no intervention needed at that time. Had his body not have done that initial healing, he would have been rushed to surgery right away. Then came the genetics team…I remember watching them as they measured his ears, the distance between his eyes, his nipples. I remember feeling like he was just one big medical anomaly. They took some blood to do some genetic testing, and we’d have to wait weeks for the results. We found out he only had one kidney. Rather than having 2 small sized kidneys, he had one large one. Lastly, I remember our pediatrician coming in and breaking the toughest news we had heard….Jack’s head was measuring too big, they were concerned that there was a problem with this brain. They did a brain ultrasound and didn’t find anything abnormal, but they wanted to do an MRI. At this point, we couldn’t take it anymore. Jack was stable enough to go home, we lived across the street from the hospital. We talked our pediatrician into letting us go home and scheduling the MRI in a few weeks. So we took him home….after hearing words like severe cognitive delays, heart failure, may never walk, casting and bracing, spinal fusion….

Being a new parent is tough. Jon and I did the best we could, but our hearts were broken. We loved Jack in a very guarded way, but the different outcomes we had been given by all the doctors were so overwhelming. The first few weeks were a blur of appointments. We saw his pediatrician every few days, just so he could check up on Jack and coordinate all of our specialist’s appointments. We saw Dr. Sawyer and his assistant, Sue. As a team, they were amazing. They did the castings for Jack’s club foot; every week they would stretch his foot and leg and cast it. On the 7th day, we’d take the cast off at home (soak it in water), and then they’d re-cast it. They also did the torture device Pavlik harness fittings for the hip dysplasia. The Pavlik harness was horrible. Jack was extremely uncomfortable in it and it made for a very fussy baby at times. Through all of this, Dr. Sawyer and Sue were upbeat, reassuring, and more importantly….they treated Jack like he was a normal baby and oohed and ahhed over him at each appointment. Those appointments with them got us through the first 6 weeks.

Sadly, I have no pictures of his club foot casts or of the Pavlik harness. Such a bummer, but at the time it seemed odd to capture those difficult moments on camera. (We all know that we've overcome all of those odd feelings and will now snap away at all times...good or bad.)

When Jack was 6 weeks old, he had his first surgery to release his Achilles tendon (to correct the club foot) and a closed reduction on his hip (trying to pop the hip back into place). Because he was going to be sedated for this, his pediatrician ordered a spinal, kidney, and brain MRI to get some answers on those defects. Nothing…..and I mean NOTHING…..prepares you for seeing your 6 week old baby sedated and intubated and the agony of 12 hours of waiting. When it was over, we were told that the hip surgery did not work, but the foot surgery did. We were given pain medication and allowed to take him home. I remember holding him all night long that night, afraid that he wasn’t going to be okay. That weekend was Mother’s Day, so I put on a brave face, but inside I was dying….we had to wait until Monday to find answers. Monday morning, our pediatrician called and gave us a gift, the MRI of the brain was perfectly normal. I remember hearing Jon repeat that into the phone, picking Jack up and finally feeling that “falling in love” feeling that new mothers feel. I had been so afraid that they were going to find something horribly wrong and he wasn’t going to make it. Hearing those words was the greatest relief I had ever felt.

And things just kept getting better. Jack started smiling and rolling over. He was a great eater and loved his paci. When he was 3 months old, Dr. Sawyer told us he didn’t have to wear the Pavlik anymore, and Jack became the most content baby ever!

The cardiologist said his heart was stable, even with the defect. She gave us the warning signs of heart failure to look out for (sweating while eating, blue lips) but thought he would do great, and wanted to see us back at regular scheduled checkups. He had spinal xrays all the time (since he was growing so fast) and they showed that the growth was stable, and so we decided along with Dr. Sawyer to do NOTHING! We would monitor it closely with xrays, and Dr. Sawyer warned us that with congenital scoliosis the first 5 years are the most important. The rapid growth during that time is when problems most often come up, so we decided to hold our breaths for 5 years and xray xray xray.

And the next 7 years flew by. We had our rough times….when Jack was 6 months old, he had another hip surgery and spent 3 months in a full body cast. Learning how to manage that cast, while dealing with strangers accusing us of being child abusers, was tough. But, we made it and can shake our heads about it today. Here's a picture of Jack in the body cast from armpits to toes. The question we ALWAYS get asked....how did you do diapers? If you really want to know, call me.

When Jack was 4, we had a scary spinal xray that showed some progression of the defects. After a whirlwind of doctors appointments in Memphis, Chicago, and Boston, we discovered things were stable and nothing needed to be done. And, perhaps our toughest time yet, was the leg lengthening...which we have made it through!!!!!

We have 7 years where the good times so far outweigh the bad times, that we consider ourselves extremely fortunate.

So, if you’ve made it this far….thank you for indulging me in my reminiscing. A prouder mom you will not find. Jack has overcome every hurdle he’s encountered with dignity, strength, and one heck of a sense of humor. He meets his challenges head-on, and once he’s overcome them, he doesn’t look back. We hear all the time that Jack is an amazing kid…and he is. What’s truly amazing is when I reflect on where he started 7 years ago and look at him now….he is just a normal little boy. He has shocked all his doctors and this “un-named syndrome” or the “Just Jack syndrome" that he was born with, is really a very small part of the person he has become.

Yesterday Jack’s massage therapist asked him, “Jack, can you believe you’re going to be 7 on Friday? Can you believe another whole year has passed?” He paused, thought for a moment, and said, “It has been quite a year.”

So, happy birthday to Jack! You are the emotional rock of our family, loved to pieces by your mom and dad, adored by your sister, and the best friend to your brother . Happy “lucky #7” to our little Jack-pot!

I'll leave you with one final picture. This is my FAVORITE picture of Jack....his first steps! He was 18 months old and in typical Jack-style....he one day let go, and walked across the room. By luck, I had my camera right there and was able to capture the moment. I love that look on his face, it's the exact same look he gave me when we took his training wheels off last week.

Goodbye 2009...

2009-12-31T06:14:00.000-08:00

This is the last update of 2009. Wow, what a year. I've debated how to wrap up this year of blogging and have gone from writing a recap of Jack's story starting from day 1 to a quick update of his last appointment. I scratched both of those and decided I'd pour a cup of coffee and sit down and type from the heart.

We saw Dr. Kogan last Wednesday. I would say that Jack's excitement to see her was slightly below his excitement to meet Santa's delivery on Christmas morning. He wanted to see Dr. Kogan and show off his progress from all this hard work these last 3 months. We saw her in the hallway as we were waiting for xrays and she came over to give out hugs to all. She said she couldn't wait to see him in the exam room, and wanted him to walk down the hall right away! So, off he went...biting his lower lip, concentrating, and trying to remember all that he's done in gain training in PT. Dr. Kogan was excited...thrilled....over the moon. I believe the words "World's most amazing kid" came out of her mouth. (And who am I to disagree with that???) Jack put on his Mr. Cool face, but I could tell inside he was dying with excitement.

We had xrays done and got into the exam room. We brought the old shoe to Dr. Kogan and did the side-by-side comparison. What else is there to say?

We made a book of Jack's journey through leg lengthening and showed it to Dr. Kogan. She took her time combing through it all, and we all could tell she was touched to see our side of the journey. We gave her a Christmas present, which was this:

She told us it was the best present she could ever receive. And we all believed her.

Dr. Kogan told us she was in Florida at the Limb Lengthening Institute observing a sugery. She said that several people said to her, "we know you and we know your patient Jack O'Neil." Apparently, our blog has traveled to this huge limb lengthening community down there. We are thrilled that people are finding it informative, useful, and hopefully comforting.

So...for those of you reading this that are facing a lengthening or in the midst of a lengthening, our thoughts and prayers are with you. This is a painful, challenging, heartbreaking journey to endure. You will have moments where you are angry that you have to endure this. You will have moments where you question everything. And you will have moments where you just can't take the pain anymore. But with time, you heal from those moments. And perhaps with more time you forget those moments. But, there are moments of greatness that live with you forever.

Dr. Kogan said to come back in 6 months. Six months seems an awful long time for a little kid to go without seeing his hero and for his parents to go without seeing their source of comfort and reassurance. I know Jack will keep working hard and I know there are many more moments of greatness to come from this kid.

Many people have asked me why I took the time to document this journey in such detail. The first months (and perhaps year) of Jack's life are a blur of doctor's appointments and surgeries. All I remember from Jack being born is hearing the word "defect" way too many times and being told all the things he may never do. I was so heartbroken, I couldn't bear to take pictures to document all the "defects" and I regret that so much. This is the one picture I have, that Jon took before I got to see Jack.

And no, that is not a bad camera angle...his leg was really bent like that.

Years have passed, and my little boy has done EVERYTHING that we were told he probably couldn't. He's proved everyone wrong, and he's done it with determination, grace, dignity, and lots of laughter. I am so proud of him that at times like this when I sit down and think about it, I understand the saying "bursting with pride." Jack, you've taught me more about life than I could ever wish to teach you.

To all the parents out there that are where I was six years ago....it's going to be okay. In fact, it's going to be great.

Happy 2009. Bring it on 2010.

Update

2009-12-14T19:25:00.001-08:00

Oh my. It's been over a month since I've updated! How has that happened?!?! Overall, Jack is doing well. He's slowly making progress. It's hard for Jon and I to see it, but his PT and his massage therapist have both commented in the last week that they're noticing improvements. His foot is still not flat and touching the ground. We think the issue is coming from the knee, his foot (the drop) is looking much better. We just have to get that knee to straighten out!!!

His gait-training is proving to be a huge challenge. He does great at times, and at other times we literally cringe when we see him walk. He can walk really well at PT on the treadmill or balance beam. When he's in that controlled environment and slows down and concentrates, he looks great. But, he's a little boy, and slow isn't his style. It is proving to be quite difficult for us to convince him that he's got to work on it. Lately he's been resisting any encouragement we've given him, so we're laying off for a week. Once Christmas break gets here I am hoping to work with him at home on slowing down and walking deliberately and standing on TWO feet!!!!!

We see Dr. Kogan on December 23rd. We are looking forward to seeing her and getting some xrays done. I am really hoping that she's pleased with his progress and we can end 2009 on a good note.

I'll post a few recent pictures, as you can see we've been enjoying the snow!

Trucking along

2009-10-28T10:59:00.000-07:00

Jack is doing well. He's working hard at therapy and showing improvements everyday. One thing we've noticed is that his gait is so much better after he's been stretched/massaged. He gets really tight and his limp worsens. So, we've been trying to do as much stretching and massaging as we can. I will say he's enjoying that :)

Here's a video of him walking today, it's a remarkable improvement!

Here's a couple of pictures from the Dells. As you can see, the boys had the time of their lives! They kept asking if we could move there. We had the park to ourselves and the boys and I did the water slides until my arms were so sore I couldn't carry Jack up the stairs to get to the top of the slide!

GREATEST invention ever. A baby swing suspended over the water. She loved it!

The boys started horseback riding lessons a few weeks ago. They love it. Their instructor said they were doing a great job, apparently horseback riding is a lot of work. They love it so much, they don't realize that part!

Max riding Red.

Jack, riding Red.

That's it for now! Will keep you posted!

We have a brace! And shoes!

2009-10-15T10:15:00.000-07:00

After five trips to the orthotist (in six days) we finally have a brace and shoes that work. Not great, but they're functional.

The biggest challenge right now is Jack's knee is slightly contractured (bent) and his foot is slightly in plantar flexion (pointed). He's basically forced to walk slightly tip-toed on a bent knee. The therapists all agreed they did not want a brace/shoe combo that would flatten his foot out, that prevents the stretching that he needs in order to correct the problem. Unfortunately, it hurts for him to walk....which is a huge disapointment for all of us. We are hoping and praying that those mucles, tendons, and ligaments stretch soon! The PTs told us they hoped by the spring everything will be resolved....I can't bear to think of months of this, so I'm hoping by Christmas! I was worried that Jack would be disapointed that he needed a lift, but by the time we got everything figured out he was so tired of being at the orthotist's office that he didn't care what we were leaving with...he just wanted to leave! He is very frustrated with the discomfort and the limping (the limp is really bad, worse than before the lengthening). He told me yesterday when he grows up he's going to invent something that makes people flexible and muscles stretch. I think after all this kid has gone through, he just may grow and create world peace. We can hope, right? :)

Here's the shoe and brace.

And here's a video of him walking. We're going to to take weekly videos so that when this is all over we can watch the progression of his gait.

So that's where we are for now. A lot of hard work in the future, but he'll do it. The hardest part is behind us, I keep telling myself. We're looking forward to this weekend. Jon has a conference in the Wisconsin Dells and the kids and I are tagging along. We're looking forward to the Kalahari water park slides and Jack claims he'll be in the hot tub most of the time. What a nut.

Sneakers...coming soon!!

2009-10-08T11:24:00.001-07:00

Jack is doing well. He is walking and running (and playing soccer!) on his leg. How he is doing that with that ridiculous brace is beyond me, but he's doing it. We've been strapping a sandal onto the brace and he's doing the best he can on it. Tomorrow we get to pick up his NEW FUNCTIONAL brace!!!!! We are all so excited. We're planning on sneaker shopping this weekend and then we have to go back to the orthotist with the brace and sneaker next week to see what's the best way to add a lift (onto the brace or onto the sneaker). So hopefully by this time next week, he's in a fully functional brace/sneaker combo!

The infection has healed. It was a real nasty one, and we were thrilled to see it gone. At aqua therapy on Monday, Jack was able to go into the hot tub (after 5 long months of watching the other kids wistfully). It was definitely the highlight of his week! Therapy is going well, it's a little challenging right now because the brace is so non-functional, but he really resists walking without it on. Nicki (the PT) has been doing lots of new stretching to address the muscle tightness in his calf muscle and his hips. Hopefully she can get those muscles loosened up and the contracture/tightness in his knee will go away.

The real exciting news around here is that the boys start horseback riding lessons today! We've debated putting Jack in therapeutic horseback riding for years. We recently revisited that idea and decided that he's in so much therapy already, let's do regular horseback riding lessons! We found a place that starts at age 4, so Max gets to go as well. They are so excited, I can't wait to watch them!

Here's some recent pictures. This was the first day he wore pants. He was so excited about looking like he had 2 equal-lengthed legs.

Cooperating for me.

Not cooperating for me.

Amelia started walking a few days after Jack had his cast off and he started walking. This is so funny because we've been saying since June that it was a contest between them who would walk first. I think it was very sweet of her to let her big brother win :)

She's also an ace at climbing. I'm thrilled about that.

And that's it for now. I know our updates aren't nearly as exciting as they used to be, so I appreciate you still checking in with us!

Freedom!!!!

2009-09-25T06:27:00.000-07:00

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!

2009-09-23T08:56:00.000-07:00

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

2009-09-14T07:49:00.000-07:00

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

2009-09-09T19:12:00.000-07:00

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?!?!?!

2009-09-04T15:10:00.000-07:00

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!!!

2009-09-03T06:33:00.001-07:00

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!

Watch the news!

2009-08-31T16:58:00.002-07:00

We're going to be on the news tonight! Fox at 9, WTVO and other local channels at 10!!!! We were totally caught off guard, but how neat!

Update

2009-08-26T06:20:00.000-07:00

Check out this video, specifically at the one minute mark!!!! This was on Good Morning America last Saturday!!!

http://www.youtube.com/watch?v=ooRIz4fOP4g

Wow, lots of stuff to update on. We went on vacation last week to Boston and Maine. We realized before hand that this could be a recipe for disaster, but everything worked out great and we had a blast! And, yes….going through security with Jack was interesting! We had a busy time in Boston, followed by a relaxing time in Maine. Jack told us he's moving to Boston when he grows up! He had the time of his life. It was SO nice for us to see him relax and just be a kid. We had a whole week without him complaining of leg pain! And, he ate....and ate...and ate. We've struggled to get him to eat all summer long, and on vacation we struggled to keep him full! He and Max enjoyed all the tours we went on, but loved playing in all the parks throughout Boston. The highlight of the trip was candlepin bowling in Maine. They had a BLAST!

Here’s the highlights of the trip:

Just our hands, we promise.

You know where this is going.

I don’t blame them, it was HOT!

Driving the duck.

Fenway.

The Boston Commons. Max and a stick. He is happiest when walking around collecting sticks and throwing rocks.

Dr. Kogan specifically told us no handstands. oops.

A family picture at a beautiful wedding in Maine.

Before we left, we celebrated a big milestone in our house. Happy 1st birthday Amelia!! Jack was sad the whole day, telling me, “I can’t believe she’s not a baby anymore.”

We got home from vacation in time for Jack to start school on Monday. He wasn’t sure he was ready to trade in sleeping in, swimming, and video games for school! When I picked him up on Monday he was very excited and happy to be back. He told me, “nobody cares about my leg at all.” It was so nice to hear. He’s struggled quite a bit this summer with other kids treating him not-so-great because of the fixator. We are so happy to have him back at school with kids that know him for HIM, not as “the kid with the weird leg.”

So, the countdown is on….9 more days until the fixator is off! Jack is still doing therapy 4 days a week. It’s a little crazy because he goes straight from school to therapy, but he seems to be handling the change quite well!

And HOLY COW...can I just say...that was waaaaaaaay too many pictures for me to resize and upload! For those of you that emailed me asking for pictures of our vacation, enjoy!!!!

Three Weeks?!?!?!?!

2009-08-13T17:03:00.000-07:00

Nothing makes me happier than to sit down and write about a good day. Today was a good, actually great day. A much-needed great day too!

The last couple of days Jack has been struggling with a few things. We were all so excited about him walking on Tuesday. He asked me to see the video I took of him and he got real quiet for a while afterwards. I finally got him to talk about what was on his mind. The tears and quivering chin came out…he said, “I didn’t know I was going to look like that when I walked. Why are my arms doing that, I look silly.” He was upset and embarrassed by the huge limp he was walking with. So, Wednesday I worked with Jack, trying to get him to step rather than hop. By the time Jon got home that night, Jack was feeling much better. He met Jon at the door saying, “my arms don’t fly around when I walk now.”

Jack got an invitation to a birthday party. He was so excited to go, but I think he was a little nervous too. We were one of the last ones to get there and all his friends came running up to him. For about five minutes they asked him a lot of questions and then they all had fun playing together. We got into the car and Jack says, “Mommy, they didn’t even care about my leg. They didn’t even want to talk about it.” I was telling Jon about this later and I think his comment was right…Jack’s entire sense of self right now is defined by this fixator. It’s almost like he thinks of himself as the kid with the fixator. It's understandable how it's happened....we spend 4 days a week in therapy, anytime we go anywhere people stare and ask questions about the fixator, and I think he overhears Jon and I talking about it a lot. I would say our entire summer has revolved around this fixator, so yes...it makes sense. So, we were glad that spending some time with his friends helped to change that and I’m hoping with time his vision of who he is changes.

So today, we headed to Chicago to see Dr. Kogan. Jack was so excited, he insisted on getting her flowers and writing her a note telling her thank you, I love you, you are a “cool” doctor. Dr. Kogan walked in the room and he was so proud to get up and walk to her. It was such a neat moment to see how proud he was and how flabbergasted she was! He told her all about swimming, the leg press, and riding his bike. She was just absolutely blown away, she kept saying, “who is this kid walking in a fixator? And he rides a bike?!? How does he ride a bike?”

Then she shows us this:

And says this:

“I think it’ll be ready to come off in THREE WEEKS!”

I know it’s really hard to see on the computer, but on the upper right hand side is his foot. On the lower left hand side is his knee. I’ve labeled where start of the new bone is. The next 5.5 cm down is new bone. You can see from the x-ray that it is really close in density (whiteness) to the bone above and below it.

I’m not sure if it’s typical for bone to harden at the pace that his has. Jack likes to think he has super-bone-healing power, while I like to think it’s all the vitamins I’ve been pumping into him. Either way, we are thrilled that this thing is coming off in THREE WEEKS! I've never been so happy to make a trip to the OR! Dr. Kogan is so good to us. When she told us 3 weeks, we realized it’s the Friday before Labor Day. She told us she wasn’t going to be working that day, but would come in just for Jack that morning. I told her she really did not have to do that, but she insisted. Needless to say, I was very happy we had brought those flowers!

The knee surgery she had planned on doing upon removing the fixator is being cancelled/postponed. Nobody can explain it, but Jack’s knee flexion has increased so much through the lengthening. It makes NO sense, but everyone is in agreement….we’ll take it! She won’t be putting him in a cast because she doesn’t want to lose the flexion he’s gained. She was talking about some sort of flexion brace…to be honest, Jon and I were so flabbergasted I don’t think we really listened well enough to know what he’s going to have on afterwards. I know we already have a list of questions about how the pin sites will heal, what sort of shoe he can wear, etc etc. We’ll call her sometime before September 4th and get some answers.

She gave us a prescription for an small external shoe lift. We could do it internally, but she thinks it’ll be easier for him to relearn how to walk with the external lift. Over time we can gradually switch from an external to an external/internal combo to finally an internal lift. Jack wasn’t bothered by having a small lift on his shoes….as long as he can wear his fuzzy crocs (which is fine, he can go without a lift at times).

So, yes….we are so so so happy tonight! Here’s to hoping the next three weeks goes by quickly and smoothly!

Quick update

2009-08-11T05:10:00.001-07:00

Jack's been acting a little strange the last few days. He's been pretty cranky, which is unlike him. He's been complaining of some muscle tenderness, which we think is some soreness from PT. There also is a pin that's been bothering him. Yesterday, at aqua therapy, he had a good session but his therapist afterwards told me he was so cold. I instantly knew what was up...fever and achiness.....pin infection! He's been off the antibiotic for a week or so now....we put him back on it last nigt hoping that it clears up the infection ASAP!

Yesterday, he was so sad. He pretty much layed on the couch all day or followed me around asking me if I was mad at him because he wasn't walking yet. One thing about Jack.....he loooooooves his mama. And, if he thinks I am disapointed in him, he just can't handle it. Well, I made the mistake of implying that I think he should be walking by now, and oh boy...he was just a mess thinking that I'm disapointed in him. So today I will make sure to be very reassuring and positive, especially since we are headed to PT.

I think yesterday was a bad day in a string of good days...sort of a reminder that this is still going on and it's still a struggle for him every day. After swimming, I was drying his legs off and he says, "mommy can you be very gentle when you dry my legs?" I asked him why and his eyes filled up with tears, chin quivering and he says, "because I have all these pins in my leg....and these pins make my leg hurt."

It's been almost months since he's "had all these pins in his leg". Hard to believe it's been 3 months, and at the same time....only 3 months???? If all works out on schedule, he'll have this on for another 2.5 months:

lengthening (turning): 50 days
consolidation (bone hardening): 100 days

We are on day 26th of consolidation. W see Dr. Kogan on Thursday to see how his bone is hardening. If it's hardening quickly, she can remove the fixator sooner and put a cast on. I think we're all holding our breaths until Thursday and hoping he's a "super healer" and that xray shows some nice white, dense bone!!!

Funny story...the other day Jack was coloring and all of a sudden we heard something drop on the tile floor. We both looked down and a strut had fallen off the fixator!!!!! Jack was ready to panic, but I started laughing and was able to fix it. This thing is starting to fall apart! Seriously....for $60,000 you would think that it would be better quality! Yes, you read that right.....$60,000!!!! Thankfully, we have really great insurance so we did NOT pay that, but I have to say....our jaws dropped when we got that EOB.

So that's our update for now. I'll definitely update Thursday after our appointment. Jack wants to stop at Dunkin' Donuts and get a donut for Dr. Kogan. He is so excited to see her, but I know he's a little nervous because he's not walking and I think he thinks she expects him to be. Poor kiddo, he puts so much pressure on himself. I think she will be THRILLED to see the video of him riding his bike and swimming the width of the pool.

EDITING TO ADD: Two hours after I posted this blog entry, this happened in my house...out of nowhere......

I am speechless!!!

Donations!!!!

2009-08-08T10:33:00.000-07:00

http://www.littlehandsmakeabigdifference.blogspot.com

WOOHOO!!!!

2009-08-05T05:37:00.000-07:00

Sorry for the lack of update this past week. We got hit with 2 rounds of the stomach flu in 10 days.

Jack continues to be a rockstar at PT. It's is just fascinating to watch his progression each week. He is improving in the treadmill, which is so encouraging. His heel is getting closer and closer to the ground when he walks (still partial weight-bearing). Yesterday he did 2 minutes on the treadmill and was exhausted. He wanted to quit at a minute and a half, but Nicki wouldn't let him. Rebuilding his stamina is going to take time, as is getting him to complete weight-bearing. We're patiently waiting though and happy with slow progress and doing it at his pace.

Our pool was finished this weekend. It is just fabulous, we are so fortunate to have it! The therapeutic benefits for Jack are incredible, but it is so much fun to see him having fun and not struggling! He can swim the width of the pool (16 feet), which is quite impressive! My dad told him he had to be able to swim the width of the shallow end before he could go in the deep end by himself. At first he could do about half the width, but he worked all day and by the end he did the entire distance. And, yes, he completely crashed in bed that night!!!! Max is quite a trip to see in the pool. My dad nicknamed him the "Submarine" because he is NEVER above water...well except for the 50000 times a day he gets out to go to the bathroom! And Amelia is content to float in her shaded floatie chewing on a Finding Nemo toy.

The charity is going fabulous!! The kids had another lemonade stand and although we had very few customers, we did have one big spender, so the day was worth it! And just a word of advice, NEVER drive by a lemonade stand and not stop! Kids get very offended by drive-bys...Jack has been known to shout "what? you don't want to help sick kids?" at cars that don't stop. So, take a moment out of your day and get a cup of lemonade...everyone has a quarter or two in their car!

We went to an O'Neil family reunion last weekend. Not only was it great to catch up with everyone, it was quite heartwarming to see our family rally behind our charity! People were handing us money everywhere...it was hard to keep track of who gave what. So, if you gave us money, THANK YOU!!!!! We are off to Build A Bear this week to start making some bears. Our first donation is going to be to Rockford Memorial. We thought it would be nice to keep it local, and both Jon and my brother in law Jamie (who's daughters are Jack's co-chairs) both work at RMH....it's the perfect place to start!

Jon and I were talking this weekend about our charity and its potential to become something really big. This project has become something VERY important to us. Throughout all we have been through with Jack, we have really avoided asking ourselves the question "why us?" But occasionally (during the really rough moments) we can't help but think, "why me? why Jack?" The thought that something really amazing...like this charity....could come out of all of this answers that question for us. If we have to go through all of this in order to learn how to "pay it forward" we can have peace with all we have been through. So, yes...something great (5.5 cm) has come out of this...but to think that something even bigger than that can happen....WOW!!!

So again...thank you all for your donations! Keep tuned, we have lots of big ideas planned!!!!

I'll end with a picture of Jack's self portrait done in art lessons. I am pretty certain that if my house was burning down, this would be one thing I would run in to save.

Week of Progress

2009-07-31T11:05:00.000-07:00

Wow, what a great week! The bike riding was the start of a week that just got better and better. On Wednesday, we went to the water park. While in the wave pool, Jack decided to stand on both legs. This is a HUGE obstacle (more mental than physical) and showing his progression towards walking. He is so excited to see Pat (swim therapist) on Monday to show her. He already told her about it, but I think he’s dying to prove to her that he CAN do it!

Wednesday afternoon we got a package in the mail. In it was…..fuzzy crocs. This kid has been dying for a pair of these for years now. He put them on and says “this surgery was so worth it.” Really, I mean, really…..all this for fuzzy crocs?!?!?! He has not taken them off and seeing as it is July those crocs are going to have a major funk soon. He loves them so much, he washes them at night with baby wipes.

Here’s Jack with his “Boston Red” fuzzy crocs. We’re going to Fenway Park in a couple of weeks and he can’t wait to wear them there!

Thursday at PT was amazing. Before surgery Jack used to do the leg press machine. Something like this (less the 45 pound weights).

On Thursday he told Nicki he wanted to do it. She told him she didn’t think he’d be able too (NOT the thing to tell this kid). He hopped on and started doing presses. I was in the other room at the time, and she comes running in saying “Heidi, you have GOT to see this.” All 3 of his PT’s happened to be in the clinic on Thursday and they were all so happy to see his progress in 2 weeks. It’s so neat to listen to them talk about how amazing he is. I can see the satisfaction and rewards that THEY are getting out of making such a big positive change in a kid’s life.

I want to pass along a quote that someone sent me (thanks Aunt Dori!!!) I love it, it gives me goosebumps and tears in my eyes. I haven’t decided what I’m going to do with it, but I’m going to do something special…I love it so much!

That’s just pain, she said. It goes eventually. And when it’s gone there’s no lasting memory. Not the worst of it anyway. It fades. Our minds aren’t made to hold on the particulars of pain the way we do bliss. It’s a gift God gives us, a sign of his care for us. ~Cold Mountain, Charles Frazier

On a funny note….the 3rd time I read that quote, my thought was “no kidding, that’s why women can have more than one child!”

And here's some pictures that show our kids' reactions when as the cement truck pulled into our yard yesterday. Even Amelia was memorized....

Bike Riding!!!

2009-07-28T19:14:00.000-07:00

Lots of great things to report.

Our charity work is going great! We’re working on making it “official”. This means lots of paperwork and me struggling to read legal jargin. My brother and I are in the process of starting a website, I will definitely post it as soon as it’s finished! Jack has been doing some major fund-raising and has already raised over $150! Not bad for a 6 year old…he’s a smooth talker! We’ve got so many ideas and are working hard to get some of them started. It’s nice to think that out of all of this, something really amazing is going to happen (as if growing 5.5 cm of bone isn’t amazing enough!)

The real BIG news today is that Jack has started riding his bike!!! This morning I was telling him how my neice has started riding a bike without training wheels (great job Izzie). Jack, in all his competitive glory, marched out to the garage, got on his bike and started pedaling.

I took the video to show his PT today and she was amazed. He’s TOTALLY weight-bearing on that foot while biking!!! She was also very impressed with his weight-transition going from sitting to standing and his gait on the treadmill. He’s still pretty far from walking independently but he’s made so much progress in just 10 days!!! Here’s him on the treadmill. He wears this fancy get-up that basically suspends him above the treadmill so he can practice his gait without really weight-bearing on his feet.

So, that’s where we are today. Extremely happy with the work Jack has put in. He’s slowly getting back to feeling like himself. He’s got (another) infection so he’s back on the antibiotics. Jon and I hate having him on them so often, but it’s necessary. They seem to bother his tummy and he’s lost some weight. I’d love to fatten him up a bit. We did celebrate tonight at Dairy Queen, so that’s a start!

I added a new link to an article I found, called “Limb Lengthening Tests Human Willpower.” It’s an adult undergoing the limb lengthening procedure and I have to admit it was a tough read for me. Reading her describe the agonizing pain is tough…hard to think my 6 year old has (and is) enduring that. She is a champion though…and I know Jack is too!

Final Measurement, 5.5 cm!

2009-07-22T16:48:00.001-07:00

We saw Dr. Kogan today. The xrays were amazing, showing 5.5 cm of new bone that is already hardening! Dr. Kogan was so excited she opened the door and started grabbing other doctors from the hallway to show them Jack and his xrays. She wasn’t too concerned about his foot, she said it looks worse than it actually is because of the slight knee contracture. She thinks with PT both can be corrected, and if not she has a few ideas of things she can do when the fixator comes off. All in all, a really great appointment….she wants to see us again in a month. She wants his PT’s to really push the weight-bearing, that’s our big hurdle right now.

Jack was so excited for his appointment today. He got idea at 7 o’clock this morning to bring Dr. Kogan flowers. He was disapointed when I told him I didn’t think there was time for us to get some this time, but next time we’d remember. He was THRILLED to be wearing TWO sandals today….first time ever without needing a shoe lift.

After our appointment we did our customary trip to Build-a-Bear. Jack got a surgical suit for his beloved monkey. We got the idea that his charity would donate bears with the surgical suit to kids in the hospital. Each bear with outfits costs $25. So far Jack has raised $15…..a $5 donation of his own money and $10 raised in a lemonade stand with his cousins, Abbie and Izzie. I told him once he got to $100, we’d head to Woodfield and get four bears to donate.

A glimpse into what’s been happening at our house this week.

Jack, proving to me that he still can do pushups.

The boys were outside golfing tonight. Jack decided to try without his walker. Don't get too excited, he's balancing on one foot.

And he swings....it isn't pretty, but it works. Future Happy Gilmore, perhaps?

And getting creative and trying some weight-bearing on his own doing the crabwalk.

And here's a picture of Max. He hasn't been getting much face-time on the blog lately, and I don't want to give him middle child syndrome.

Jon shared his popsicle with Amelia. We were laughing at her expressions......

....and then I remembered, I had seen that face somewhere before......

That's Max, several years ago, being fed a popsicle by Jack.

I put the boys on the deck the other day while I vacummed, swept, and mopped. This is how they entertained themselves while I vacummed, swept, and mopped. And then they had to come inside to shower off and walked all over the floors that I had vacummed, swept, and mopped.

And, here is the current state of our backyard. This has been providing hours of entertainment for the boys this week!!!! I’m hoping they have as much fun playing in the pool as they are watching it be built!

Moving Forward

2009-07-16T11:44:00.000-07:00

WE. ARE. DONE. TURNING.

Big news from our house….we are done with fixator turnings. When we started this Dr. Kogan told us that this process goes until the kid and parents can’t take it anymore, and that we would know when we reached that point. We are all in agreement that we reached that point last week and we kept pushing on…but enough is enough. We are done and I have never felt so at peace with a decision in my life. I talked with Jack this morning and told him we can stop whenever he wants. He said, “we can’t stop, we haven’t gotten to 6 cm yet.” I told him that we want to stop when he feels like his body is telling him it’s time. You could see the relief on his face as he said, “I can’t take it anymore mommy. I am done, I want to stop.” Our goal started out at 3 cm, and each once we reached 3, it became 4....4 became 5...and so on. His body just can't do the full 6 cm. Medicine is a science, but not an exact science. This is more than a fixator, xrays, and orthotics, we need to remember that there is something far more important than any of that...a person, a 6 year old kid, that just can't take it anymore. We're making this decision solely based on Jack and his emotional health. He feels great about the decision and we do too!

So, that’s that. If you look back to my first post, our goal was 3 cm. Today, with fixator turnings we made it to 5 cm….adding in the 5-7 mm from the surgery we are around 5.5 cm of growth. Jon and I didn’t dare dream we’d ever make it past 5 cm. When Jack was in the OR, Dr. Kogan called to tell us that she had to put the small struts on and the struts would need to be changed sometime between 3 and 4 cm. I remember Jon and I looking at each other and thinking we weren’t going to let ourselves imagine getting that much growth, we weren’t going to get our hopes up to make it past 3 cm.

So, yeah…..5.5 cm feels pretty damn good!

BEFORE

AFTER

BEFORE

AFTER

I've been by his side every moment of this, I've seen every turning along the way....and my jaw still drops when I see those pictures side by side. Absolutely amazing!

Jon called Dr. Kogan this morning. As far as stopping the turnings, she left that completely up to us. He is our child, we are in charge of making his decisions and I’m grateful that she left it up to us. I think she knows that we’re in a far better position to make this decision than she is. As far as addressing the foot (plantar flexion) and knee (slight knee contracture) issues, she has a few ideas. Her first thought is botox injections. We’re not thrilled with that thought…we tried botox once before with zero results for Jack. It’s expensive (insurance does not cover it) and it’s VERY painful…I can’t even imagine him enduring an injection into those rock-hard-over-stretched muscles. Her other thoughts are surgical lengthenings of the hamstring and Achilles tendon. Obviously we are disappointed to think of having 2 more surgeries, but we’re more apt to go that route than the botox. I talked with all 3 of his PT’s today and they were all very encouraging, urging us to not do anything yet. They really think with time they can get both the hamstring and Achilles to loosen up. They had the same thoughts (and hopes) that we do…now that we are done lengthening the bone, the muscles/tendons/ligaments will catch up in their growth too.

The PT’s main concern is his hip. He now hikes his hip up really high to keep his foot way off the ground. It’s really quite fascinating actually….his brain and body are used to having that foot at a certain distance off the ground, now that the leg is lengthened his body has accommodated this need to keep the foot up that distance by him walking with his hip hiked way up. If you look at him while he’s standing, his foot is still 8 cm off the ground…what it was before the lengthening! So, the PT’s are going to have to teach his brain and body that that foot belongs on the ground…..after that we can work on him teaching how to walk, run, kick, etc etc. It’s going to take a long time, we have realized that…but I think it will be a fascinating process to watch.
He has made progress with putting pressure on his foot. He loves playing in the rice and sand with his feet, leading the therapists to believe that his sensory issues are actually anxiety rather than actual sensory problems. For now, his anxiety (and very understandable anxiety) issues are our biggest hurdle. We’re slowly making progress, here he is putting a good amount of weight on his leg.

So today is a good day. Our mantra is “baby steps, baby steps” (no pun intended). I think today is the best we’ve felt in weeks, it’s nice to be moving forward. I asked Jack how he was feeling today and this was his response, I think that’s a good sign.

I can't wait to celebrate tonight...with excessive amounts of ice cream!!!!

Weight-bearing

2009-07-14T05:42:00.001-07:00

Well, we knew this was going to be difficult......oh boy, we were right! We have tried at home to do put some pressure on his foot. We've been able to get him to lay his foot on the carpet and that's it. At swim therapy yesterday, the PT's were hoping to get him to weight bear in the pool but were unable to make much progress. He did let them put his foot under the pool jets, which at this point is a start, I guess. Pat, his swim PT, wants us to work on de-sensitizing his foot by rubbing his foot on different textures and temperatures. We need to build up the tolerance to touch in that foot before we can start putting any pressure on it. She also told me "if there is any kid that can do this it's Jack. In 22 years of being a pediatric PT he has the best attitude I've ever seen." That was nice to hear, but a little confusing because at home lately his attitude has been less than positive.

Jon and I have been a little concerned with Jack the last few days. He's been very down and unwilling to even try to do things. All he wants to do is lay on the couch and watch tv or play video games. Obviously, that isn't acceptable!!! It's been really hard to watch his personality change so much so quickly. We are suspicious that the cause of it is the medicine he's taken (that we just recently up-ed the dose on). It has side effects of causing mood and behavior changes, especially in pediatric patients. Since Jack has already shown to have adverse side effects to other medications, it seems to make sense. This is really complicated because this medication is to treat the nerve pain in his foot and toes. Treating that pain doesn't do us any good though if he's too depressed to get up off the couch! He's told me many times that he can't stop thinking about his foot and that thinking about it makes it hurt worse. So now we're trying to figure what is going on. We're going to take him off the medication completely for a few days and see how that affects his pain level. I'm really hoping it causes in improvement in his mood, which would lead to an improvement in his tolerance of the pain. I feel like we're in the same situation we were with the Valium, the medication was causing more trouble than good! It's very frustrating, because you can tell he wants to have a good attitude and he wants to keep trying, but he just can't seem to get the motivation to do it!

Right now he just finished drawing pictures of himself and writing lists of everything he's going to be able to do soon. We're hoping that will give him a little bit of inspiration to start working a little harder!

Here's his self-portrait.

This says, I am Jack. I do not give up.

I am going to ride my bike.

I am going to run.

I am going to kick a ball.

I am going to walk.

I am going to swim.

I am going in a hot tub.

I will not quit.

Yesterday we went to the Japanese Gardens and had lots of fun feeding the ducks and fish. I have a friend visiting and the kids are loving having someone new and fun in house!

Feeding the enormous goldfish.

Feeding the baby ducks, while the mom watches cautiously.

Max, picture taken by Jack.

Jack, picture taken by Max.

Mia, clearly thinking that she spends her entire days stuck in that stroller.

To prove her wrong, we got her out. After being tortured by her brothers for 30 seconds, she was ready to get back in the stroller.

49.7!?!?!?!?

2009-07-09T19:07:00.000-07:00

We had our appointment with Dr. Kogan today. This week has been rough, Jack has been complaining about his foot. He has a lot of pain on the bottom of his foot (where his arch is), he describes it as a stretching pain. His toes have been very painful…poor kid can not tolerate them being touched, even putting a sock on hurts them. Just in general, his foot is very sensitive and tender. We called Dr. Kogan on Monday after a very rough day and she said she had a few ideas about what it could be and we’d discuss it on Thursday, emphasizing that we should NOT stop the daily lengthenings. His aquatic PT and his regular PT both thought it was something nerve-related. They also wanted us to ask the doctor if they could start some weight-bearing work with him to help get that foot back where it should be.

So, today Jack is sitting on the exam table and Dr. Kogan was chatting with Jon and I. Not paying much attention, she says, “let’s check out this foot” and reached over and grabbed his foot. Jack screamed, almost kicked her, and starts sobbing. She felt horrible, she kept saying, “I am so sorry Jack, I forgot, if there is any patient I would never hurt it would be you.” I had tears in my eyes because he was in so much pain just from her touching his foot and she really truly felt terrible. We got him settled down (thank God baby sister Meezy was there to make him laugh) and Dr. Kogan says, “oh yeah, that’s nerve pain.” I never really got a clear explanation from the PT’s, Dr. Kogan, or our in-house neurologist as to what exactly is going on with the nerve….stretching, pinching, over-stimulating….whatever. All I know is that it hurts really really bad and we need fix it. Now. We are upping his Neurontin, which is hopefully going to take care of the pain. Dr. Kogan agreed with the PT’s that it is time to get him weight-bearing. I am dreading this and looking forward to this. With the nerve pain, he isn’t exactly thrilled with the idea of putting weight on that foot….not to mention he’ll have to relearn how to walk now that he doesn’t have a 6 cm length discrepancy and a heavy shoe lift to cart around. HOWEVER, once we get over the initial hump and the nerves settle down I think this will be very exciting. Speaking of exciting….we got some very incredible news today…..

Jack’s new bone growth is at 4.97 cm!!!!!!!!!!!!!!!!!!!!!!! With our turnings we calculated him to be at 4.3 cm, but apparently the osteotomy itself (the breaking of the bones) and putting the fixator on stretches the 2 bones apart a small distance. Today, by xray he had 4.97 cm of new bone. Technically we have 10 more days reach our goal of 6 cm, but we don’t see Dr. Kogan until the following Wednesday (13 more days). I’m not willing to stop turning until I see that xray that shows me 6 cm. So, 13 more days!!!! It’s do-able. This past week I had many “I can’t do this anymore” days….a big huge thanks to my parents and my sister for pushing me through and keeping my eyes on the final goal.

So, that's the appointment update for today. We ended with a visit to the OT to get the foot brace padded and softened up. While we were there, we raided the tootsie roll bowl...so I would say that was probably the highlight of the visit.

When Jack had his surgery and we were in the hospital, there was a boy down the hall celebrating his birthday. They decorated his door with a big “Happy Birthday” sign. I remember walking by his room on my way to get coffee and you could tell by the way his room was decorated that he has been there for a while. It made my heart drop and I went back and told Jon about it. Well, Jack must have overheard this conversation because he’s brought it up several times since. Last night he says to me, “I wish I could do something for kids who are in the hosptial on their birthday.” I explained to him that there are charities that buy presents and cakes for those kids and he says to me, “well, I want to be a charity.” I told him it’s not that easy, you have to raise money to buy the presents, etc etc etc. He was completely unfazed and says “I can do that.” So, I asked him what his charity is called and without skipping a beat he says “Little Hands Can Make a Big Difference.” (Yes, my heart melted too…..) Jon and I talked with him and he REALLY wants to do this, so we’re lettin him do it! Our plans include a bake sale, a talent show, a raffle, and an art exhibit. I will keep everyone posted on our progress. I have to tell you one more thing he said, “Mommy, we have to make sure we buy them really nice presents, so when they open them they will feel good that someone bought them something nice and not junk. And we have to wrap it nice, with lots of bows. And we HAVE to bring them Dunkin Donuts because everyone knows America runs on Dunkin.”

Happy 4th of July

2009-07-04T06:54:00.000-07:00

It's been a few days since I've updated. This week has been going pretty good. The new struts seem to be much easier to turn, and are working well. Jack is tolerating the new foot brace, however, I'm not sure that it's working all that great. His foot still is definitely dropping and he is tolerating little to no pressure on the bottom of it when we try to push it up. His PT tried to work on it Thursday and he was in so much pain he was crying (something he's never done at therapy before). At this point, we're just hoping the brace prevents it from dropping any more. We see Dr. Kogan on Thursday and are very anxious to hear what her thoughts are. It's causing several problems right now. Mainly, as his leg grows his foot is now dragging. He is tripping constantly, which is very painful on his foot and leg. We're very concerned about how he's going to tolerate weight-bearing (walking) on that foot when we get to that point. It's going to be difficult at first, I really hope Nicki (his PT) and we are ready for it. I'm not even sure how we would put a sneaker on that foot, and measure him for any small shoe lift he may need (probably a 1-1.5 cm internal lift).

So.....a little bit of worries on our mind at this point. Jon said the other day, "let's just make it to Thursday and then we can come up with a plan with Dr. Kogan." On Thursday, he will be at 43 cm....to recap, our inital goal was at least 3 cm, hopeful to get 5 cm, thrilled with 6 cm. At this point, I think Jon and I are okay with stopping before 6 cm. The risk of damaging that foot any more is just not worth it....it would be like taking one stop forward, and then one step back. I would love to make it to 5 cm, which is 2 more weeks. I know that doesn't sound like much, but to us....2 more weeks is a loooooong time.

The pin infection is still there. The antibiotic seems to make it better, but not clear it up completely. He isn't complaining of any pain and doesn't have any fevers, so we aren't worrying about it. Sleeping-wise, he has his good nights and his bad nights. His attitude is so adorable, I wish you all could just hear him and his comments of "I never give up" "I just keep trying". Jon and I are amazed at the things he's willing to try to do now that weeks ago he was petrified to even think of trying. He's turned into a little monkey and by bedtime, his arms are exhausted! He'll be happy to show anyone his "bumps", which is what he calls his arm muscles.

So, that's where we are today! I think overall things are going very well. There are several risks in this process....and it seems like we are facing all of them :) HOnestly, I think it's VERY rare for someone to undergo this and NOT face these obstacles. As long as I know it's all normal and there is a treatment plan, I can handle it!

And now on to the fun stuff.....Max has been playing tball for a few weeks now. He loves it so much, and Jon and I get quite a kick out of watching him. He is very serious, but does sneak a peek to smile at us occasionally.

He is quite the fielder.

Ready position.

Rounding into home.

In this last picture, he is making his fishy face. It comes out when he's concentrating. I think the other team's heavy-hitter must coming up to bat.

Jack started art lessons this week, which he loves. He brought home a picture that was truly an artistic masterpiece. :) No, really....it was a very cute solar system picture that we are going to hang in his room. I think it's really nice for him to have something to leave the house to do that is not therapy or doctor-related. He has the lessons with 2 friends of his, and that's something he really looks forward to!

We took the boys to the waterpark yesterday. It was fun, we stuck to the lazy river and wave pool, there was no way I was letting Jack go down the slides (much to his disapointment). The boys loved the wave pool, Max was belly flopping into all the waves. When they turned the waves off, the boys loved swimming around. Jack was swimming back and forth from Jon and I, we were amazed that he could do it. He kept saying "I never give up mommy, I never give up." They both crashed in the car on the way to pick up Mia from my parents house, ahhh....love that swim-induced nap that kids take!

And here's a funny picture from a couple of weeks ago. Jon sprayed the slide down with the hose. He decided to turn the hose on Jack, which obviously Jon thought was hilarious. What a guy....spraying the handicapped kid in the face when his walker is 10 feet away. No worries though, Jack can handle himself and has been plotting revenge ever since. Super soaker, anyone???

Shiny New Struts

2009-06-30T05:45:00.000-07:00

We went to Rush yesterday to have the fixator struts changed. I swear if you could put our car on auto-pilot, it would take you to Rush! The car ride there was loooooooong with an uncomfortable, crabby, and very hungry little boy. Everything went fine. Jon carried Jack back to the OR (our request) with his ni-ni (very special, very tattered blankie). Jon said Jack was checking out the OR, and we were wondering how many 6 year olds know what the inside of an OR looks like! Jack panicked a bit when they put the anesthesia mask on, he always does. Now, this is the kid that will watch a nurse put in and take out an IV, but hates the gas mask….strange! Jon and I had enough time to grab a quick bite to eat and within 30 minutes Dr. Kogan was done. They page us to a waiting room and we talk to the doctor over the phone from the OR, because she had another case to get to. Her first comment to Jon was, “please tell me that ni-ni had a hole in it before we took it to the OR.” She was concerned that they had put a hole in Jack's blankie in the OR. She’s a mom, can’t you tell??? And that is why we LOVE her, she “gets” kids!

Anyway, she said he definitely has an infection. She scrubbed the pin sites and gave him a huge IV dose of antibiotics. She said to keep him on the oral antibiotics and keep an eye on the infection. She said if the new struts get to be hard to turn (they weren’t this morning) we may have to switch to turning more often….I really don’t want to do that, I like to stick to protocol. :) It would be nice to do the lengthening twice as fast, but there are risks….and I don’t like risks! We'll see, like I said, today they were nice and easy to turn.

Here’s are new shiny struts. They go up 62 cm, we won’t need to go that high, but another 3 cm would be fabulous!!!!

Jack was starving afterwards, so the ride home went well. I sat in back and helped him eat potato soup (his favorite) and then he crashed into one of those anesthesia-still-in-the-system naps. It was heavenly...until I made myself carsick by reading in the back seat! :)

Here’s a picture of the new foot brace. It’s been tolerated quite well!

And, here’s a picture of Jack…sending some love to his readers that we love so much!

appointment update

2009-06-25T19:49:00.000-07:00

We had an appointment with Dr. Kogan today. The xrays were amazing, we have 3 cm of bone growth! Dr. Kogan was REALLY excited, you could tell she was having one of those “this is why I do my job” moments. It was very neat to be a part of that! She thinks the reason we are having difficulty turning the struts is because his bone is healing so quickly each day. We asked what that means and she said, “It means we need to hurry up.” We can’t turn more than 1 mm a day, so she was joking…but I think that the more we lengthen, the harder it will continue to get and eventually we won’t be able to do anymore, and at that point we’ll be done. This is just *my* thoughts based on what I’ve read, heard from other parents, and from things Dr. Kogan has said. I am hoping that the quick-healing means that the consolidation phase (bone hardens, still in fixator, can be weight-bearing) goes smoothly.

I think Jack is getting another infection in the same pin that was previously infected. I’m not sure it ever really cleared up. We’re going to keep an eye on it, he will be getting a super dose of antibiotics in the OR on Monday, so hopefully he’ll be fine until then and that will do the trick. This one pin has been problematic, it’s really the only one that bothers him. Dr. Kogan said technically she could take it out, she wants to keep it in until the lengthening is over (~30 more days).

Jack’s PT pointed out to me that Jack’s foot seems to be dropping a little (like as if he is trying to point his toes). I think it’s called plantar flexion. Anyway, he was fitted for a new foot brace (I’ll post a picture tomorrow). He did not like it at first, but I stood him up and showed him how his toe is touching the ground and the rest of his foot is not….he realized that’s a problem. We told him if it continues to get worse, he’ll need a foot surgery after this was over and amazingly enough…the new foot brace was much more tolerable after that!

Overall, a good appointment. The worst part was the car ride. The poor kid is just miserable in a car seat.

Cute story….the other night we went out for dinner. As we were leaving, Jack (in the walker) was trying to open the door. He got really angry and says to me “all places should have those doors with the buttons you push to open the door (referring to handicapped-accessible doors).” I told him that I would help him open the door and he got so worked up and says *he* wants to open the door for himself. He went off on this rant (I was very proud, I love a good rant) about how places are just not made for people in wheelchairs and walkers and how it’s not fair and he tells me “it makes us feel sad and frustrated. We want to do things for ourselves.” Jon and I explained to him that when he could do something about that…grow up to become an activist, lawyer, etc. Fast forward to today….we’re on our way to Max’s t-ball game and Jack says it would be fun to grow up and be on television, but “I’d rather fight for the wheelchair people.” Then he asked me not to forget that because that’s really what he wants to grow up to do, but he’s afraid he’ll forget when he’s bigger what it is he wanted to grow up to become!

Fraggle Rock

2009-06-21T06:26:00.000-07:00

My favorite show as a kid was Fraggle Rock.

Little did I know someday I would actually get to live with a Fraggle.

I haven't updated for a few days, not too much going on. Therapy visits are going well, massage is going well. We go to the doctor to see Dr. Kogan on Thursday for xrays and a check-up. We are scheduled to have the struts changed next Monday. This is very exciting because it means he will have outgrown the original struts. This is an out-patient procedure. He will be sedated, mainly because it's easier (and quicker) for the doctor to do it this way. Sort of a bummer, because he won't be able to eat all day Monday, but I'm sure he'll be rewarded with ice cream and other highly-desired edibles once it's over.

As of today, we are at 2.5 cm. Here is Jack's shoe, the foam lift insert is 6 cm. With the growth that we have so far, we would be able to remove 2.5 cm of lift, which is the white layer of foam. If we can get another 2.5 cm - 3 cm, he would only need a very small lift, which can be worn inside his shoe. If we get that far, I will be dancing in the streets, and Jon will be at the mall spending a full paycheck on flip-flops and crocs. Oh, the things we have promised.....

Here's a picture of the current struts. You can see the progress he has made. He started at the bottom of the ruler, and is nearing the top.

So, we're making progress and things are going well. All in all, a good week!

Today is Father's Day, so a big happy Father's day to all the dads out there! I'm a lucky girl...I have a great dad and I married someone who is a great dad. I've been told that I am the spitting image of my dad, which would explain why we find one another so incredibly charming and splendid. My one question is though....does that make Jon the spitting image of my mom???? We're heading to my parent's house for a cookout (we put the men to work in our family, even on Father's Day :) ) I'm hoping Jon gets off work in time to join us! I picked up some steak kabobs last night and I KNOW he can hear them calling his name! Happy Father's Day Jon, from all 3 of your adoring kiddos!

Not much of an update

2009-06-17T14:39:00.000-07:00

Not too much to update on...which is the way we like it! Everything is going so well, it's sort of scary. We're enjoying it and hoping it stays this way. We're waiting on a call from Dr. Kogan. Two of the struts we are supposed to turn daily are really tight. Today I could barely get them turned, so we're hoping to find out if there's a way to loosen them. If not, I'll be getting out the wrench tomorrow, which will make Jon nervous....he always gets nervous when I get in his tool box :) We took a one of the incision bandages off and noticed a stitch that is sticking out of his skin! It's the craziest thing, it's about an inch and a half of clear string sticking straight out of his leg. I want to cut it off, but Jack won't let me.

The other really truly exciting news in our house is that Jack lost another tooth. I'm hoping Mr. Tooth Fairy has cash in his wallet because Mrs. Tooth Fairy has none!

I'll end with a cute story....yesterday Jack figured out how to hoist himself from his walker into his carseat. I drive a big SUV (a gas guzzler, which I do feel horrible about) and it's quite a feat for him to do this! He looked at me and says "I'm Jack, the kid that never gives up and works harder than everyone else." :)

Then, on the way home from PT, Max scraped his foot on the curb in the parking lot. He was sobbing all the way home (he doesn't deal with blood....even a teeny tiny speck....very well). Finally, Jack says "Max, look at me. I've got big huge pins sticking out of my leg and you don't see me crying about it." I couldn't help but laugh. A lot.

Milestones and Anniversaries!

2009-06-15T20:25:00.000-07:00

I’m happy to report that we are on a string of really good days. The complaints of pain have been much less frequent and Jack’s attitude is waaaaaaay better. It’s been heavenly, life seems much more normal. Let’s hope it stays that way!!! Jack had aqua therapy today at Peak Fitness. He asked me on the way why it’s called Peak and I explained to him that when athletes are performing their best, it’s called being at their peak. We were waiting to get into the pool and he looks at me with his green goggles on, hair sticking out everywhere, and says “I think I’m ready for a workout.” He wasn’t kidding! He swam for 45 minutes. He was having a blast, it must have felt so good to have that freedom of movement and be able to use that little leg. He had a noodle under his arms and swam until he couldn’t go any more. He gets out of the pool, looks at me, and says “mom, I think I’m at my peak.”

The best part of swimming, is it softens the skin around the pin sites so well that tomorrow we won’t need to do much pin care in the shower. When I told Jack that, he told me we need to get a pool in our yard so he can swim everyday.

Tomorrow is a very exciting day, we are at the 2 cm mark. We are all so excited about that, we are 1/3 of the way there!!! Today marks one month since Jack had his surgery. One month??? Really…that seems unreal. Those days are a blur to us, but it seems like ages ago. I am so glad it’s behind us, and really glad that I’ve kept this blog to keep record of everything. I have a feeling (and I’m sort of hoping) that this all becomes a blur someday!

Tomorrow is our 8th wedding anniversary. I said to Jon the other day, “Really? It’s only been 8 years?” It seems crazy all that we’ve done and gone through in just 8 years. We started dating when I was 18 and got married at the ripe old ages of 22 and 24. Over the 8 years, we’ve moved 5 times (twice 850 miles), had 3 kids, made it through med school and residency, battled leaky pipes and crappy cars, went to endless doctor’s and therapy visits….and tried to keep laughing through it all. Our lives have changed so much since we first met….we’ve replaced college drinking games with Uno and Memory and late night runs to the store are for Dairy Queen rather than a case of cheap beer. We still do shout out “nudie” whenever one of our kids decides to streak around the house at bathtime….so maybe things haven’t changed so much! It’s been a great 8 years, I would not change a thing…I’m looking forward to 80 more!

UP

2009-06-13T04:27:00.000-07:00

Dare I say we are making progress? Two nights ago, Jon had a heart to heart with Jack and tried to teach him some relaxation techniques that he gives his patients to help them sleep. Jack got up twice that night, which is a remarkable difference compared to the 200000 times he’s been getting up. Friday morning’s shower was a disaster again, and I’m starting think that’s not going to change and I should just get in there and do it as fast as I can and forget trying to calm him down along the way. Afterwards, Jack and I had a talk and I told him I miss the old Jack, my happy, silly, loving kid. He looked at me with that glazed look in his eyes that men get when they want you to think they’re listening, but they’re really not. You women know what I’m talking about.

We had a busy day…Max had swim lessons. He has a new instructor and it’s just him and his friend, Sara. The 2 of them are just too cute together and her mom and I enjoy chatting the 45 minutes away. Then, Amelia had her 9 month check up. She’s our tall (75%ile) skinny (25%ile) baby. Clearly, she’s destined to be a supermodel, but surely will choose something much more fascinating like an astronaut or politician.

Jack had his massage appointment. I am not sure what happened on that table, but it was wonderful. A minute into the massage, he started chatting and just would not stop. It was heavenly…it was the endless silly chatter of kids that really gets on your nerves, but then when it’s gone for a few weeks you really miss it. His massage therapist is married to an artist (a really amazing one) and we decided that he is going to start giving Jack art lessons. Anyone that knows Jack, knows that this is perfect for him! We had sent Jack’s friend (daughter of the lovely massage therapist and amazing artist) a thank you card with a picture of Jack on it, and we were told that she carries the thank you around in her purse. It’s safe to say that Jack was completely flattered about this. He kept bringing it up throughout the night…”can you believe that Sylvia carries a purse? And, like her mom said, she puts *my* picture in it.” Too funny! I was telling the massage therapist about his sleeping problems and she offered to give us some essential oil that she puts on a cotton ball on her daughter’s pillow to help her sleep. So, we left with the oil that we affectionately named “Sylvia’s sleep potion.” On the way back to the car, Jack tells me that he wants to be old Jack again, and that the sad and angry Jack is no fun. We agreed on that one and opted for a hug and kiss rather than a shake of hands. And I made a note that the glazed look face does not necessarily mean that they aren’t paying attention.

We had a date planned, and our first stop was Toys R Us. My aunt had sent Jack a gift card and after 24 hours it had singed a hole in his pocket. He knew exactly what he wanted, a new lego set and we were out of there in minutes (this made possible by the fact that we have ditched the wheelchair and are now using his walker almost exclusively).

Then off to the theater. We saw UP. BEST. MOVIE. EVER. If you love your kids….your spouse….anyone….go see UP. Jon took the boys last week and Jack loved it and wanted me to go see it. I want to go back today and see it again. LOVE IT LOVE IT LOVE IT! And it being Jack’s favorite movie makes me so warm and fuzzy inside….those of you that have seen it will understand what I mean. Anyway, he was a great date, insisting we hold hands until my arm fell asleep. Then, he oh-so-casually slipped his arm around my shoulder and tickled my shoulders. (I’m not making his up people). Anyway…do yourself a favor on this rainy day, get to the theater and see UP.

We ended with dinner at Panera bread. We chatted over a bowl of soup and made plans to head to the bookstore. These plans diminished as Jack was sound asleep before we were out of the Panera parking lot. We got home and tucked him into bed with his sleeping potion. It took about 30 minutes to get him comfy and asleep….but he is STILL SLEEPING NOW….10 hours later. No wake ups all night long.

Yesterday was the best day we’ve had in a month. I think both Jack and I forgot for a few hours about fixators, wheelchairs, pin care, bad-tasting medicine, and just enjoyed one another’s company. I know that we both needed it and what a blessing it was! I’m hoping and praying that we are turning a corner here and things continue on the upswing.

Oh, and for those of you that are wondering….Jon took the little ones on a date as well. Apparently, they did some serious mall walking as he had some shopping to do. (Yes, you are allowed to laugh at that. He was looking for an anniversary gift and not out shopping at the mall for fun). And he took them to Garrett’s to the driving range. How funny is that??? He said Max hit all the balls while Mia slept in the stroller. He said he got quite a few comments from other golfers…I’m sure he did, hanging out on a Friday night at the driving range with 2 little kids! They ended the night with dinner at the Olive Garden and when they came home, they all looked pretty happy as well!

update!

2009-06-10T09:03:00.000-07:00

I changed the settings on the blog, so anyone should be able to leave a comment now. I know some people were trying and not able to do so.

Yesterday was an okay day, lots and lots of complaining about so many different aches and pains that I lost track of what was actually hurting! Last night he spiked a high fever and totally lost it. It’s hard to explain, and I know that those of you that know Jack find it hard to believe…but it’s like he literally loses control of his emotions and just starts screaming about everything. Jon and I were wondering what to do to calm him down. I suggested to Jack that we get in the shower and I promised him that it was just to relax and play…no pin care. We stuck him in there and within minutes he had relaxed. I got him a bunch of squirt guns and he sat in there for an hour happily playing and singing. At this point, Jon and I didn’t know if we should hug him or wring his neck. I got him out of the shower and we had a little talk. He had gotten himself so worried about everything he hears us talking about…how he needs to sleep, the infection, the fever, etc etc etc that he just could not settle down. Sometimes I can’t believe this kid is only 6 years old, he takes the weight of the world on his shoulders, and obviously this process is more than he can handle. So, I talked to him and told him the infection was better and the fever was gone (not true, but he needed some reassurance). I told him the doctor said his leg was doing so perfectly he didn’t have to come back for 2 weeks (that’s the truth!) and that if he doesn’t sleep tonight it’s no big deal (meanwhile thinking, "please God, let this kid sleep tonight"). The look of relief on his face was priceless. So, we went downstairs, watched some Ice Road Truckers and I massaged his leg. He did eventually fall asleep and he did have another very restless night, but it was better than previous nights.

So, Jon and I have decided we need to be REALLY careful about talking about anything in front of Jack. He has a HUGE tolerance for physical pain, but the emotional pain of this is more than he can handle. This comes as a shock to us, as he is SUCH a reliliant kid...but everyone has their breaking point and I think we've surpassed his a few times now. Lesson learned....

This morning so far is going well. He has learned to transfer himself to his wheelchair and out. Out of the blue, I hear him yelling, “mom get the video camera, I want to show you what I can do.”

And here's a picture of him doing his favorite thing, going as fast as he can and then letting go. It's actually quite amusing until someone gets run over.

I gave him a shower and did some serious pin care. He hates this and to be honest…I really do too! There are 9 pins and I have to get in there and clean them out, push the skin back, all the while the shower water is soaking me and Jack is screaming his head off. It’s so important to do though and if I didn’t do it early in the morning, I’d reward myself each day with a drink! He definitely has a couple of infected pin sites that I’m hoping the antibiotic clears up soon.

Anyway, it’s almost noon and today (less the shower) has been very low drama and actually quite enjoyable. The boys are playing dominoes now and watching a new movie from Aunt Jen and her family.

I wanted to take a minute and give a big shout out to my 2 little ones. Amelia, who is typically a mommy’s girl and is only happy when attached to my hip (literally) has taken a complete 180 and now is happily entertaining herself most days crawling around putting small choking hazards into her mouth. Okay, I could do without having to dig the choking hazards out of her mouth all day, but the fact that she is happily entertaining herself all day is a blessing. And I know I am completely biased...but how cute is she? This is how I found her this morning.

And Max….he is just a gem. He patiently has been understanding that I am busy with Jack and he seems to be Jack’s favortie target of releasing some frustration. He takes a beating well...what else can I say? Max is a kid that is just wired to be outside all day and he has been SO great about staying inside playing games with his brother. Anyway, I just can’t say enough about Max and what a trooper he is. He starts tball tomorrow and I can’t wait for him to be the center of attention for a while…doing his favorite thing in the world! Here's Max on his birthday:

Build A Bear

2009-06-08T18:52:00.000-07:00

First, just let me say…I hate coming on here and blogging after a bad day. But, I made a commitment to keep this honest, so here goes……today was a REALLY. BAD. DAY.

Saturday was a rough day and I was up with Jack allllllllll night long. Sunday was a better day, we went to the Shriner’s circus, which was a nice distraction. We loved the circus, but are all in agreement that we have no interest in actually joining the circus. Sunday night was another miserable night. Jon and I were up with Jack all night. He literally was tossing and turning and whimpering the entire night. He finally fell asleep a couple of hours before I had to wake him up to leave for his doctor’s appointment. Jon cancelled his clinic at the last moment and went with me. He just felt with how rough things have been the last few days he needed to be at the appointment. My mom went with too which was nice, she kept the little ones in the waiting room while we had the appointment. They did xrays, which were AMAZING to see!!!!! He has exactly 12 mm of new bone growing between the 2 breaks. This was such a relief to see and definitely the highlight of the day!!!!! We asked Dr. Kogan about all the pain he’s been having. Some of the pin sites look a little red, but she didn’t think they looked too bad. She wrote us a script for an antibiotic just in case. The muscle aches and pains he’s been having are normal, and part of this process. For the discomfort at night (it’s almost like he has restless leg syndrome) she and Jon discussed a few medicines and they finally decided on Neurontin. Let’s hope it helps!!! We are scheduled to go back in 2 weeks.

We headed to Build a Bear, where as promised we bought a ridiculous amount of cute stuff for their beloved Zebra (Zebrie), Turtle (Simon), and Bunny (Anna). It was a lot of fun!

We got home in time to get to swim therapy. I was unsure how it would go, at this point Jack was a mess. He was/is so overtired, he just gets so worked up and can’t settle down. But, we had to get to the therapy appointment so we went. Jon went into the pool with him and it went okay. The therapist said the first couple of sessions they just give the kids a chance to warm up to the concept of aqua therapy. Jack definitely was not having the time of his life, but by the end of it seemed much more comfortable. I’m really hoping this ends up to be a positive experience for him because he loves swimming. I had filled the prescriptions while they were in the pool, which was good b/c he felt feverish when he got out. Sure enough, we get home and he’s running a fever. I got him in the shower and really tried to clean up the pin sites, which did not go over well. And by that I mean, he was screaming at me the entire time. But, I did it and I’m glad I did. We’re pretty certain he has an infection in one of the pin sites. Thankfully, we have the antibiotic and we’re hoping it clears the infection up. Quickly. He’s been sleeping pretty restlessly for about 2 hours. We’re hoping that tonight is a better night¸but are preparing to be up with him.

So, that’s where we are today. Jon and I are both feeling a little drained by this all right now, and now understand what the doctor said when she told us we do this until the kid can’t take it anymore. Here’s hoping tomorrow is a better day!!!!

CELEBRATE!!!!

2009-06-06T10:21:00.000-07:00

The most important thing I have to say today is….HAPPY BIRTHDAY MAX!!!!!

Four years ago today, Max entered this world at a whopping 11 lbs, 1 oz!!!! He was a big ole’ chunk of love then and he still is today! All he wanted for his birthday was a Chronicles of Narnia sword and he spent the entire morning sword fighting before heading to the driving range with Jon. He’s looking forward to eating dinner at his favorite restaurant tonight, Buffalo Wild Wings and I’m looking forward to spending the day celebrating our Maxi Moo Moo…which is the horrible horrible nickname we started years ago and it’s stuck. Yes, someday we will be paying therapy bills to undo all the damage a nickname like that does.

Another reason to celebrate today…we’ve reached the 1 cm mark!!! The turnings are still a bit rough, and to be honest a crappy way to start each day. It is SO neat to think we’ve grown a cm though, we’re making progress. I can’t wait to see the xrays on Monday. My mom is coming with me and I’ve promised the boys a trip to Build-a-Bear afterwards. It should be fun and filled with an excess of stuffed animal purchases.

We had 2 therapy sessions this week. They’re going well, it’s nice to see him getting stretched out because I worry about that leg being so straight all day long. His therapist really worked him Thursday and he told me he felt like his skin was ripping at the pin sites. That was tough to hear, but it’s so important to keep him stretched out. He has his first swim therapy session on Monday afternoon. I can’t wait to see him in the pool. I know at first he will definitely be hesitant, but once he relaxes he’ll love it.

We had his first massage today. He giggled for the first minute or two and then he was a silent, wet noodle for the rest of the session. I think it’s safe to say he loved it. The therapist had his knee bent at a 45 degree angle by the time she was done when he was on his tummy. It was soooooo nice for me to see him so comfortable and relaxed. We’ll be going back weekly…yet another appointment, but so worth it! And the highlight of the massage…he got to see Sylvia, a girl from his class and the daughter of the therapist. Jon and I have a suspicion that Sylvia holds a special place in Jack’s heart….and he was so pleased when she came running outside to see him!

We’ve got Jack up and about in his walker for the most part. He has a little bit more independence and it’s so much better for his back to be up and moving. I took the boys outside the other day and we figured out a way for Jack to play t-ball, swing, and maneuver up and down the swingset. We had a blast with the kids on the swings the other night. It was so nice to see Jack having fun just being a kid and to forget for a while that he isn’t our “patient.” Here’s some pix and a video….now, I know the video holds little excitement for most, but Jack’s comments that you can hear towards the end are really heart-warming.

Oh, and just an update on the cookies....Amelia enjoyed hers too!

Turnings

2009-06-02T08:37:00.001-07:00

Yesterday's and today's turnings went better than previous days. In large part due to this guy:

When squeezed, he does this. Gross, I know...but very amusing to a 6 year old boy.

It's something to distract Jack and I think the squeezing when it hurts helps release some of the tension. We called Dr. Kogan and she said the pain behind his knee is where the calf muscle attaches. As the bones grow, the muscles/tendons/ligaments do too...so the pain he has is the muscle stretching. Makes sense because he describes it as a pull that burns. She said to give it a few more days and if it isn't better by our appointment on Monday there are some things that can be done to alleviate the discomfort.

He had his first PT session yesterday. He was pretty excited to see Niki and she was so happy he was there. He got quite the attention from several of the therapists, and he didn't seem to mind that one bit! A lot of the therapy is going to consist of stretching the knee and trying to prevent atrophy of the muscles. We'll see Niki twice a week and do aquatic therapy once a week. I am really hoping the aquatic therapy is fun for him, if so we'll get him into swim lessons. He's looking forward to it, he has a friend from his school that will be in the therapy session with him!

Here's some pictures of the ruler along the fixator struts.

These markings show the progression of the lengthening...1 mm a day. These struts can give us 37 mm of lengthening. Our goal is 50-60 mm, so in a month or so we will need to go back and have the struts changed out. This is a non-surgical procedure, just time consuming. From my understanding, he will be sedated for it just to help keep him still and for the process to go a bit more quickly.

This is the knob that we turn. You can see in the background 3 of the 5 other struts.

And that's about it for the excitement around here. Niki suggested that we encourage him to get up and moving with his walker more and that he can scoot around on his bottom. I'm trying hard not to push him, but it would be realllllllllly nice if he could start doing a bit more on his own! I really think at this point, he is still afraid of potential pain (understandably), but I think with time that will pass and he'll get more of his independence back. I know that will be nice for all of us!

4 mm

2009-05-31T06:59:00.000-07:00

We're slowly growing over here. Things are going okay. The turnings are not going as smooth and pain-free as we were hoping they would be. Jack has some pain and discomfort in the back of his upper leg while we’re doing the actual turning. It’s ending up to be quite the ordeal every morning, which we are all disapointed about. He’s definitely had a bit of a set back in how he’s feeling since we’ve started doing the lengthening. I think that makes sense, it’s got to take quite the toll on his body each day. He’s complaining a bit more about pain, but we’re trying to keep him off of the pain medication. It zaps his appetite, and he’s barely eating anything. I think right now we all feel a little bummed but we’re hopeful that his body just needs to adjust to this process and things will improve. He is enjoying the thought that his leg is growing. He sticks his fingers between the growing space between the rods and you can tell he’s thrilled about that!

We’re hoping to get him started in some massage therapy this week. I really think the sitting all day is tightening up his whole body. A good massage should help with that. He tells me he wants to do it, but I have a feeling he’ll spend the entire time giggling! Tomorrow we start physical therapy. He’s been with this therapist for a while, so I’m hoping things go smoothly. I think it’s going to help so much with some of his pain.

So, that’s where things are for us today. This entire process is a roller coaster, we are learning. I have a feeling these months will be filled with really good days and really bad days. Let’s just hope the good outnumber the bad!

Growing bone

2009-05-29T05:42:00.001-07:00

Yesterday we went in to see Dr. Kogan. Jack had xrays done and they were fascinating to see! I wish I had brought my camera to take a picture of them to share. You could see where both bones were broken and where the pins and rods are attached. We all thought it was very cool, including Jack who seems completely unfazed talking about the saws used to cut his bones and how the pins were drilled in there.

We learned how to turn the fixator. Basically, there is 6 rods and we turn each one until it clicks. There is ruler markings on each rod, so we can see it growing the 1 mm each day. Pretty easy, even Jack did one of them. She gave us this printout of a schedule...it shows each day what the ruler reading should be after the turnings. We decided I would do the turnings each morning after I shower Jack and clean up around the fixator. Jon isn't happy about this...he says I'm stealing all the glory :) We're going to try to make a video of how to do it and show that it's painless (Jack says it feels weird, but doesn't hurt).

I've gotten a lot of questions about the fixator getting wet. He can shower with it on. We have to use Dial antibacterial soap and basically soap up above the fixator and let the soap run down his leg. It's fairly easy, but I have to say Dial soap does not give him the sweet little boy smell that his Wild Berry Suave body wash does. After showering, I usually inspect around all the pin sites to see if there's any gunk that's built up (gross, I know!) If there is, I clean it up with sterile q-tips. He can't take a bath, but he can swim in a chlorinated swimming pool. He starts pool therapy soon, which I am so excited for. I'm also debating putting him in swim lessons, it is a huge hassle to drag all 3 kids to the YMCA. But, it's really the only exercise he can do and he loves swimming. They offer private lessons, which obviously he would need. I'm going to see how the first pool therapy session goes and then decide.

We really got quite the looks yesterday in the hospital. It's amazing how nice people are to you when they see you've got a kid in a wheelchair. We got a lot of questions of "how did he break his leg?" I am torn on how to answer this....part of me wants to really educate people on what we're doing and about his congenital defect. The other part of me thinks it's A LOT of effort to explain over and over what's going on. Jon and I were trying to come up with funny responses. My favorite was "it's a skydiving accident." Jack didn't find that funny.

We ended the day at Rainforest Cafe for lunch. I really really really do not like Rainforest Cafe. But, it was Jack's choice and Jon said he had one more day of getting anything he wanted so that's where we went. :)

COOKIES!!!!!!!!!

2009-05-27T19:44:00.000-07:00

Whew, today is over. What a crazy day, but now all the kiddos are tucked into bed…so all seems right in the world again. :)

This morning was wonderful. We had friends stop by this morning with lunch, dinner, balloons and presents. What more could we ask for??? They even spent time playing with my kids, which right now is the biggest blessing I can get! One can only play so much Uno, and I’ve had my fill. So thank you Debra for keeping Jack entertained for an hour and Michelle, the food was delish!

Oh, and then this showed up on my doorstep.

I think it went over well.

Each of the 3 kids had their name on one cookie. The boys asked me which cookie was mine since my name wasn’t on any of the cookies. I told them the rest of them were for me. Jack looked at me, serious as can be, and says, “I think you need to call the person that sent them to make sure. That just doesn’t seem right.” So, Kent and Kris, if he asks…I called you, right? And the rest are all mine, right? :)

Amelia has started crawling, which to be honest I could do without. It’s cute and all, but I’ve got a 6 year old learning how to drive a wheelchair. He ran over her today. Twice. And it hurt. A lot. She cried. A lot. He was upset because he really loves his sister. A lot. She was rather crabby today anyway, on account of she’s getting over the stomach bug and popping out 2 teeth. She was a real peach all day, but tonight we finally figured out that she’s happiest naked playing with matchbox cars (a future Danika Patrick perhaps?) So, I went with it and we ended the evening on a nice note.

Jack complained about some pain today above his knee. I think it's from not being stretched out in almost 2 weeks. I did my best to do some stretching and he loved that. He asked me if I used to be a PT. When I told him I hadn't, he said, "Really? Well, you should think about it because you are good."

Oh, and I find it very amusing that I overheard my boys discussing Jon and Kate this morning over breakfast. (I'm referring to Jon and Kate plus 8, in case you are living under a rock and don't know who Jon and Kate are.) Based on what I overheard, I'm pretty certain that the boys are on "Team Jon".

I’ve gotten a request for pictures, so here you go! This is Jack’s view:

Here he is with a few of his lego masterpieces:

Jon and Jack, using this fixator as an excuse to play video games for hours.

The volcano launch. The blanket was there to provide warmth, not protection.

Amelia…don’t be fooled by the bow and the sweet smile…she is a beast. I also realize there is snot all over her face, I’m fighting a losing battle with that this week.

And a final picture of Max. No reason for posting this picture other than to annoy my father who’s first thought is going to be “can’t they PLEASE cut that kid’s hair?” :)

Tomorrow is the day we head to see Dr. Kogan. I’m hoping Jon is home in time from work today to go with us tomorrow morning!

First Hurdle Cleared

2009-05-25T18:11:00.000-07:00

If someone would have told me a week ago that we would be where we are at today, I would have never believed them! I can say that Jack has recovered. He is down to 1 pain medication twice a day and that seems to be managing any pain he has. His attitude is back to being very positive. He's entertaining us with his never-ending commentary on life in a wheelchair. "I'd love to help you out mom, but in case you haven't noticed, I'm in this wheelchair." He's immersed himself in legos (thank you to all who have sent legos!!!) and art projects. We all relaxed a bit and had a great weekend. Jon's parents came down Sunday and gave Jon and I a break for a couple hours. It was nice to get away and we went all crazy and went to Lowe's and Sam's Club. So, a big thank you to them for coming to visit!

Tomorrow Jon goes back to work. I know he’s sad to be leaving us, but I am confident that we will all be fine! He’s an amazing father and husband, and he took care of ALL of us through the worst of the days. But, it’s time for life to go back to normal…..so get to work Jon!

I truly believe that there will be many blessings that will come out of this process. One thing we have learned these past 10 days is that we are truly loved by so many people! To all of you that called, texted, emailed, followed our blog, made meals, sent cards, gifts, prayers…words can not express how thankful we are. We have had people reach out to us from the east coast to the west coast…from Canada to Florida! It is absolutely overwhelming, but what a blessing to come out of all of this. People we haven’t talked to in years and years and years have tracked us down to offer support. So thank you thank you thank you to all of you! To my family, you guys are the best. You have rallied around Jack and took care of all of us during all the rough times. I don’t know how we could do it without you, and I know that Jack wouldn’t be half the kid he is if it weren’t for you.

Our next step is to start the lengthenings. We see Dr. Kogan on Thursday and she’ll walk us through how to do it. I know Jack well enough to say that after Thursday he will happily educate anyone on an Ilizarov fixator and give a complete demonstration on how to do the actual lengthening. We will turn the fixator 1 mm a day. We’re hoping to lengthen 5 cm, so if everything goes perfectly it’ll take 50 days for the lengthening. And the good thing about the lengthenings is that they should be pain-free. During that time, he is non-weight bearing. He can swim in chlorinated water and will be in physical therapy at least twice a week and have weekly doctor's appointments for xrays to watch the bone grow. It’ll be an adventure…that I am sure of!

So…..for now, we’re taking it day by day. I will keep updating our blog very regularly. It’s a great way to keep everyone informed and it’s been very therapeutic for me to organize my thoughts each night. We originally started this blog to put our story out there….in hopes that there’s a family in the position that we were in 6 years ago that can find our blog and gets answers and reassurance. We’ve never let Jack be defined by his medical limitations and it was hard during that week to have them so “in our face.” It’s nice to have that past us and have our “Just Jack” back, good as new.

Overheard

2009-05-23T17:13:00.000-07:00

Things that were said in my house today:

1. "Jack, do not run over your brother with your wheelchair."

2. "Max, you have to do everything I tell you to because I just had surgery. A really big surgery."

3. "UNO!"

Things are going well. Our biggest challenges now are that our house is definitely NOT wheel-chair accessible and how to keep him entertained in that wheelchair for the next 2 months.

I am so NOT complaining that these are our challenges. We're loving having things back to normal...a new normal, but normal nonetheless.

One week post-op

2009-05-22T06:50:00.000-07:00

One week down and things are going GREAT! We have drastically reduced the amount of pain medication he was on and taken him off of the Valium completely and he is doing AMAZING. I think he can handle a bit of pain/discomfort SO much more than he could handle the side effects of the medications. It is such a relief to see the old, upbeat, funny Jack back! It's like someone flipped a switch. The poor guy...that medication was messing with him!

Yesterday was busy. We hung out in the clubhouse of the swingset making and painting our volcano. And legoes. Lots and lots of legoes. He fell asleep doing legoes and woke up wanting to finish them! Good sign!

We got to participate in a chat last night with a limb lengthening specialist from Baltimore. His clinic does a huge amount of the lengthenings done in the US each year. Anyway, it was neat to read get his opinion on lengthenings and how they should be done. The biggest thing I took away from it is we need to up his vitamin supplements. He already is on Calcium and Vitamin D, but we need to up his dosage a bit. The doctor also recommended during the lengthening portion of this process to keep the leg elevated as much as possible. So it was nice to learn a few things...even if it was at 11 pm!

We talked to Dr. Kogan yesterday. She loves Jack, Jon overheard her telling the anesthesiologist in the OR that he was her favorite patient (how could he NOT be???) She's great, she's given us her phone number with strict intstructions to call her directly whenever...don't bother dealing with the residents. Which, of course, is awesome...but the comment about the residents made us laugh. Anyway, we feel so fortunate to have her. In fact, she just called to check up on Jack and see how he's doing.

Obviously we are just thrilled with his progress. What a difference a few days makes. We could not be prouder of our little man!

For those that asked...Jon was shopping for home decor, not balloons and streamers! Jack told him yesterday he's turning into a woman! He's gone to Bed, Bath, and Beyond twice by himself!!!! And yesterday, he even hit the craft store and the greenhouse. I think he's been taking some of that medication, he's acting awfully loopy :)

Adding pictures

2009-05-21T08:28:00.000-07:00

Good night last night. His attitude seems to be MUCH better this morning. I'm doing a happy dance...he's been trash talking during Mario Kart and planning his volcano eruption. We are definitely feeling good today! I'm adding pictures throughout the blog, so if you're interested scroll down through all the old posts.

Signs of the old Jack coming back.

This showed up in our backyard yesterday. We're hoping he's good enough to get on the swing soon, until then he enjoys hanging out in the clubhouse.

This picture is priceless...the first genuine smile we'd seen in days.

Don't be fooled by the enthusiastic look on his face, he was not thrilled that we were making him do this:

And THIS is what we're dealing with folks. It isn't pretty, but we're hoping to be looking at it for the next 5 months!

Another day down

2009-05-20T19:52:00.000-07:00

It is so nice to be home, but quite a bit busier! Jack had a great night last night, he slept for 10 hours. I had to wake him up every 2 hours for his medicine, but he fell back to sleep quickly.

We are still battling that back pain. He complains of it constantly, so we know it's hurting and frustrating him. He can't get comfortable in a position to relieve the pain. It's so frustrating for us, he rarely complains about pain in the leg...it's the back pain. Jon pointed out that Jack seems to have a tolerance for the leg pain, he expects it to hurt. But the back pain is unexpected and so frustrating. We're hoping it gets better quickly. It has to, right???

We've decreased his pain medication today. He threw up every time we gave him the Valium, so we decided it wasn't worth it and stopped giving it to him. Funny story, that I'm not laughing about today, but someday I will....We put Jack in the wheelchair and he and Max were in the deck sitting and playing legoes. Amelia was scooting/her-version-of-crawling on the deck. Jon gave Jack his Valium and he projectile (and I mean projectile) vomited all over Max. Max starts screaming "I don't want puke on me", Jack is screaming because it hurts his back to throw up, and Amelia starts crawling in the puke. It was unbelievable. Ok, actually I can laugh about it now.

We're still working on lifting his spirits up. This has been the hardest thing for me to watch. I just did not expect this from Jack. He is such a vibrant, happy-go-lucky kid and to see him in this almost-depressed state is just heart-breaking. We have got to get this back pain taken care of and then he can be up in the wheelchair and we can do more. Jon is taking Max to his last day of school party tomorrow and Jack and I have plans to build a volcano. I'm praying he can sit up long enough to do it (and stay awake!)

Jon and I each took a little break today and got away for a while. Jon went to the store for pillows to pad up the wheelchair and came home with stuff to decorate the house with. Those of you that know Jon will find that very funny! He did a good job, I may be putting him in charge of decorating the rest of the house. It's hard to believe that we moved from NC and closed on this house one year ago tomorrow!

This is a crazy roller coaster of ups and downs. I keep telling myself he's improving everyday, slowly improving, but it is getting better. I've taken pictures along the way. I need to find the time to download them and post them to this site.

We're hanging in there. I've got strict instructions to get some watercolor crayons that we used in the hospital, so I'm off to do a little online shopping. Retail therapy.....works every time :)

We. Are. Home.

2009-05-19T18:51:00.000-07:00

It feels really good to say we are home!!!

After a rough night and a difficult morning PT session, I got to the hospital with Jack's favorite person ever...his baby sister. His spirits were immediately lifted and he was pretty pleasant the rest of the day. He tried to put up a fight during his afternoon PT session, but I didn't give him a choice. He walked across the room a few times and then we were free to go home.

To celebrate...a chocolate covered strawberry. I swear this was his idea.

Jon took care of some of the discharge work and I packed up the room. We had a visitor from http://www.snowcityarts.com/ Jack did a piece of art that will be included in a mural in an exhibit in June. We all throught that was very neat.

He likes the concept of the wheelchair, but we need to do some modifying to it to make it comfortable for him. He loves trying to push it himself, which is really interesting seeing as he's pretty loopy and unsteady from the pain meds. His back is really sore right now from the epidural and we're hoping that gets better soon and he'll be feeling much more comfortable. We're still working on keeping him calm and for the shrieking to stop. Please God, stop the shrieking. I know with time, he'll get more comforable with the fixator and the anxiety will diminish. Anytime now would be great. Jon and I are totally over that screaming!

On a funny note...he did tell me he was going to run over people at the mall in his wheelchair. When they look mad at him, he's going to tell them, "Come on...look at me...I had surgery, look at this thing on my leg." That made me laugh...typical Jack!

If this picture doesn't belong on a Wheaties box, I don't know what does.....

Monday update

2009-05-18T20:42:00.000-07:00

I'm updating this from home, unfortunately Jon and Jack aren't with us. I came home tonight to get the 2 little ones home in their own beds. Max has preschool tomorrow and then is headed to a friend's house. Amelia and I are heading back to the hospital in the morning. Hopefully, we'll be bringing Jon and Jack home with us. If not, Jon and Mia will be coming home tomorrow night and I'll stay with Jack.

What a roller coaster this is. Pain management-wise we are doing okay. He's definitely in pain, but for the most part it's tolerable. Our biggest hurdle right now is emotionally the kid is just spent. Literally, he just can not settle down. I think he's hurting, exhausted, scared, and so drugged it's confusing. The moment someone opens the door to the room, he just starts shrieking....uncontrollably. He doesn't want anyone near him, I don't blame him at all. We wanted to get him up in a wheelchair today and to take a shower. Neither happened. He was not going to cooperate so we all decided it wasn't worth it. We did get him in a recliner sitting on my lap. He screamed the entire time we were doing it, but finally relaxed and slept on me for a couple of hours.

The child life specialists have done their best to try to help us out. They sent a therapy dog and a therapy rabbit...neither of which impressed Jack much. He did get a wooden model care to assemble and paint. He had fun putting the glue on for Jon and tried his best to paint a "rainbow car". His pain medication is so strong, he is having troubles focusing visually on things. Coloring, video games, reading....all of this favorite things and right now he can't do them.

Obviously, this has thrown us off. Jack is such an easy going kid, we never expected him to react this way. It's totally understandable, we are just unprepared for how to handle it. I'm hoping that once he's home he can relax.

I talked to his surgeon, Dr. Kogan today. I saw her in the hallway and burst into tears. She was so reassuring and told me that everything from the pain to his behavior was totally normal. She said this is one of the most painful processes for someone to endure. She said when she rounds on her teenaged patients after the surgery, they scream at her and tell her to cut their leg off. Within 2 weeks, they're almost back to themselves...within a month, they're good as new. She promised me that the kids always bounce back from this and recover, however, most parents are left scarred. She told me that once he's weight-bearing (~6 weeks from now) we need to celebrate....and celebrate BIG. We're planning a trip to Disney in November, but I'm starting to think we may be planning to go sooner. Like in 6 weeks and 1 day from now :)

On the upside

2009-05-18T07:26:00.000-07:00

Good night last night. We got Jack laying on his side and I crawled into bed with him. What a difference it makes to have mommy by your side all night. Instead of waking up screaming, it was a calm, "mommy, I need something." It felt so good to hold him all night, I swear I was trying to heal his little body with love.

The pain is well-managed now. This is not to say there is no pain....he gets severe cramps and sharp pains in the pin sites where the skin is stretching. HOwever, he is comfortable most of the time and we are able to settle him down with breathing and distracting.

The epidural is coming out today! I can't wait to lose the tape on his back. It sounds silly, but that tape is one of the worst things right now. It is driving him crazy....it hurts when it pulls his skin, it's hot, and sticky. Once the epidural is out, we can take out the catheter and I think he'll feel so much better.

That's the plan for today. We saw his surgeon today and she said everything that is happening is 100% normal....that's what we want to hear. She wants him to take a shower today, which will be interesting...but he'll feel so much better afterwards. And, we're scheduled to do PT in the therapy room so we get to get out of bed and out of this room!!!

Today, we are feeling good. It feels like things are getting better slowly and that's all we're hoping for!

pin care and therapy

2009-05-17T18:07:00.000-07:00

We were able to get a better handle on the pain. That was a relief. The nurses did pin care for Jack, basically they washed the fixator with a peroxide solution. They had a child-life specialist come with them. Her name is Shira and she is by far the best person in this hospital. Basically, her job was to explain to Jack what they were going to do and then to keep him distracted while they did the cleaning. She worked wonders!!! Not a single wimper during the whole cleaning. What a relief.

The PT came in to do a little therapy. I really wanted to get him out of bed, but he was so scared that it would hurt that he was fighting us. We did get him to sit on the side of the bed but he was so upset it wasn't worth doing much more. I was disapointed because I really wanted just to hold him on my lap, but while he was sitting up I did get to give him some hugs which felt really good.

He fell asleep immediately after the PT left. He is on so much pain medication that he's in this semi-sedated state. It's nice to know he's not hurting so much anymore, but it's so hard to see my vibrant boy struggling to keep his eyes open.

We did get some visitors today. Jack had a friend from school that stopped by with his parents. Jack was sleeping so he didn't actually get to see him, but they left an amazing care package that warmed his little heart up when he saw it. My parents brought Max by. Oh, how I miss that little guy. He was his normal, bouncy self and the normalcy that he brought into the hosptial room was such a relief. Jack was so excited to see his nana and papa. He played a little, ate a little, and fell back to sleep. It was so hard to say good-bye to Max but he was happy with going back home with my parents. Mia is doing great with my sister's family. She's quite attached to my sister and insists that Mindi holds her all the time. It is such a relief to know she's happy, but we miss her so much!!! Miss Mia usually goes everywhere with me, so I'm having a hard time going so long without seeing her. My brother and his wife also came to visit and as always, the laughter that Rick provided was great. It's nice to laugh and forget how crappy our current situation is.

Let's pray that the pain continues to be managed. I am dreaming of getting that epidural out, so we can lose all these wires and tubes. I joined a online support group for parents of kids with fixators and my inbox has several messages of other moms telling me we just have to get through these first 2 weeks. They've promised me that in 2 weeks, I'll be yelling at Jack to settle down or he's going to break the fixator. Right now, that seems hard to believe. I've asked myself a hundred times if this is worth it. I know that 5 months from now I will be so glad we did this, but right now it's hard to think we chose to do this.

Tomorrow afternoon, I'm going to get the little ones and spend the night at home with them. I'm hoping to leave Max with a friend on Tuesday and come back to the hospital with Mia. I'll continue to be back and forth until Jack is home. It kills me to think of leaving him, but I think the little ones need their mom too. Jon will be here with Jack at all times...he is just amazing with all of this. His medical training definitely is a blessing at times like this and he's a great dad...so I know Jack will be in great hands.

So tonight we are hopeful. In a much better place than we were last night. We know that this WILL get better, so we're full of prayer and as always, trying to focus on the positives. My sister in law told me that Old Navy is having their $1 flip flop sale this weekend...I just may have to go seeing as I promised Jack a pair in every color :)

update

2009-05-17T06:12:00.001-07:00

Just a quick update. We're having some problems getting Jack's pain under control. He's at the maxiumum dosage for his epidural, so we upped the frequency of the vallium and added in some tylenol with codeine. It's hard to believe, he is still in pain. He seems comfortable for about an hour or two and then will wake up screaming in pain. Jon and I are doing our best to keep him distracted and calm, but it's so hard. He's in a bed connected to wires and tubes, so it's frustrating to not be able to give him a hug. I would love to just have him sit in my lap right now, I think he'd feel better and I know I would!

I'm not sure if the epidural is coming out today or not. It would be nice to get it out because a lot of the wires and tubes can be taken off once the epidural is out. However, we're afraid that oral meds won't control the leg pain. We're waiting for the pain management team to get here.

We were supposed to have PT at 8:15, but our nurse is having them come later. We're also scheduled for pin care today.

So, please pray that a solution for the pain is found today. We'd love to get that under control, get him out of bed, and maybe eating a little.

Jon and I are so proud of him. I don't know how such a little boy can have such strength. We know we just need to get through these next few days and hopefully before long, this weekend will be a distant memory.

1st PT session

2009-05-16T12:53:00.000-07:00

Can I just say...sitting in a hospital room is soooooo boring. I mean, really really boring. And you're sort of damned if you do, damned if you don't. Sitting in the room staring at one another gets a little old, but leaving the room is heart-breaking. So many babies and really really sick kids in here. It's a tough place to be.

Doing a crossword puzzle and watching a movie with Daddy:

Jack is hanging in there. He had his first physical therapy session today. It went a little rough. We got him sitting up with his feet over the edge of the bed. We thought he'd love that because he is so tired of laying flat and he's been complaining of the tape from the epidural hurting his skin. Unfortunately, sitting up did NOT relieve that discomfort...add in the pain from the PT bending his leg and it was torture. He was in so much pain and the PT was trying to distract him by asking him questions about school and his family. He was trying his best to answer her between sobs...it wasn't pretty. But, it's over and shortly after the nurse came with our favorite thing in the world, the Valium, and I started reading his book and he was out within 5 minutes.

After a 2 hour nap, he woke up for a snack. Jon had gotten him popsicles and saltines. The popsicles were a 2-pack and Jack informed Jon he was going to only eat one because eating two would be "way too much sugar." He wouldn't try the saltines because they were the low-sodium kind and he "only likes the ones with salt." sheesh, talk about hard to please. Kidding, of course. Thankfully, I had a bag of goldfish crackers and he is happily munching on those playing MarioKart, which after Valium is my favorite thing in life right now.

I just got instructions to finish coloring the picture of the Painted Lady caterpillar that he had started earlier. I hope my work lives up to his expectations :) I'll keep you posted.

Valium is golden

2009-05-16T05:23:00.001-07:00

Last night went well. After the pain was under control, Jack slept from about 7 until 11. He woke up and played some video games from 11 until about 1 am. The nurse came with his valium and he was out until 6. He woke up with some discomfort...more from the epidural tape, IV, and all the sheets/pillows/blankets stuffed around him. I think he was more uncomfortable than in pain. We watched a movie until the nurse came with his Valium. Within 5 minutes he was peacefully resting. The Valium is to relax him and prevent muscle spasms, and it is the greatest thing in my life right now!

Right now we're hoping that he can keep down the juice he had this morning so we can graduate to some broth or jello. He is starving....truth be told, so are Jon and I, but I challenge you to eat in front of a 6 starving 6 year old that can't! We're thinking we're going to sneak out and each grab a quick bite to eat.

Jack is holding up okay. He told us he's scared about what else the doctors are going to do to him :( We're trying to reassure him that the worst part is over, but I can completely understand his worries. We're not sure what is in store for us today, if he'll be getting out of bed or not. We'll keep you posted!

Playing DS with his animals and blankie that never left his side.

Surgery Day

2009-05-15T18:09:00.000-07:00

Thanks Rick for the update. The surgery went well from what we hear. They were able to put an epidural in and will be leaving it in for a few days.

We met Jack in recovery and he was slowly waking up. After an hour or so, he was up, playing video games and drinking water. He said, "this doesn't hurt at all." We showed him the fixator, he paused his video game, glanced and said, "cool" and went back to his game.

Unfortunately the anestheiologist decided to lower the pain medication. Jack proceeded to projectile vomit the water all over Jon (great aim that boy has!) We got transferred to our room and he started complaining of pain. We told 2 residents and our nurse about 5 times....after an hour or so someone from the pain management team came up and realized he is NOT kidding, he is in serious pain. She gave him a quick dose of medicine and upped his epidural meds back to where they were. Of course, this made him naueous, so he vomited the water again...but is now resting peacefully.

So.....we have yet to keep anything down liquid-wise. But, the pain is under control. At this point, that is our only concern...once the pain lessens and he's taking less medicine, he'll get to eating and drinking again.

The fixator....oh, the fixator. Let me just say....seeing pictures of the fixator does not prepare you for actually seeing the fixator ON YOUR CHILD. For those of our readers that are facing a limb lengthening in the future.....look at lots of pictures of fixators and then multiply that sick feeling in your stomach by 1000. I have yet to get a real close look at the pin sites or watch them change the dressings. I'm observing from afar at this point, and thankfully my amazing husband has promised that I can take my time...he'll take care of everything....for the next 10 days at least!

Overall, we are feeling good. The surgery is OVER!!!! WOOHOO!!!!! We know these next few days are the worst and we have today over, for the most part. We appreciate all the messages and good thoughts. Our hearts are full of prayer and hope for this to work!!!

Before surgery, looking a little nervous, but very brave:

Surgery is over, Jack is doing Well!!!

2009-05-15T11:45:00.000-07:00

Getting to the point as quick as I can, surgery is over and Jack is doing Well!!! I only have a couple more detail other than that. The surgery started earlier than expected because the case before him finished early. Jack is still sleeping and just starting to wake up. Jon and Heidi are right by his side helping him out.

On a personal note, what a brave big boy. I know he has more courage than I and has such a good spirit about everything. He and his whole family always put a smile on your face when you see them. Heidi, I used spell check :).

Let's Get This Party Started

2009-05-14T07:46:00.000-07:00

Jack took the news of the change of plans well. Of course, that could have something to do with the fact that I told him on our way to Toys R Us to buy him whatever he wanted. We're not above out-right bribery in this house.

We're set to go tomorrow at 10:30. Which means if we are in the OR by noon, it'll be a miracle. The surgery is about 3 hours long, so hopefully by early afternoon it will be over. And then, we can all breathe.

My brother Rick will be updating the blog as soon as Jack is out of the OR and we see him. So, please excuse any spelling or grammer mistakes that he makes (just kidding Rick) :)

Jack's last day of Kindergarten was today. He was sad to say good-bye, but excited to hear that he can spend the next few months in his pajamas :)

Jack had his first surgery on May 9th, 2003. He was 6 weeks old and was sedated and intubated for 10 hours for hip/foot surgery and an MRI of his spine and brain. I remember thinking that day that it would be so much easier to do this if he were older and we could explain to him what was happening. Now, he's 6 years old and I can't help but think this was so much easier when he was a baby. Truth is, it's never been easy to do this and it never will be. But this surgery has been hanging over our heads for 6 years now and it will feel soooo good tomorrow to check it off the list. I know we have a lot of support and prayer and we appreciate that more deeply than I can put into words. Please know that despite the worries that we carry we are filled with excitement and celebration right now. Jon and I are very strong parents, and we have been blessed with a son that has more strength and courage than anyone I know. Add in his fabulous sense of humor...and he's going to be a real catch someday!

Thank you to everyone that follows our blog. We promise to updated it often throughout this journey. We also wanted to say a big thank you to my parents and my sister's family...they'll be keeping our little ones all weekend. It is a relief to know they are in good hands and we don't have to worry about them. Please don't send them home too spoiled!!!

What is going on????

2009-05-13T10:41:00.000-07:00

I hesitate to post this here, for fear that in another hour things will change again!

Back to the original plan. We are doing the tibial lengthening on Friday at 10:30. Jon and I really challenged her decision to make the change in the first place and after consulting with others....it's been decided to keep with the original plan.

None of this is too shocking. Jack's case is an original...this complicates everything b/c there is no presedence of a treatment plan to follow. Making medical decisions for him takes a team of doctors (usually from all over the country!) Everyone has their own opinion on the right way to do things and of course, Jon and I get to weigh in too.

Sooooo.....let's hope that things don't change again. We are much more nervous now because this surgery is "the big one". But, at this point, we all just want it DONE! I am excited to get Jack from school because I think he's going to be excited.

Jack lost his first tooth last night. It was very low-drama...Jon reached inside his mouth in the middle of dinner and pulled it out. Jack told us the rest of the night, "I feel so different about myself now that I've lost a tooth. I feel like a different person."

Can you imagine how he's going to feel about himself when he sees that fixator on his leg? YIKES!!!

Slight change of plans

2009-05-12T10:17:00.000-07:00

We got a call from Jack's surgeon yesterday and she wants to make some changes to his surgical plan. Originally, the plan was for him to have the leg lengthening this Friday and then after that process was done to do a patellar tendon lengthening on his knee. She has consulted with a couple of her colleagues and they have decided to do the patellar tendon lengthening this Friday and the leg lengthening in 4 weeks.

Soooooo.....that's the new plan. A bit disapointing because we were all really looking forward to getting the leg surgery over with and that process started. The tendon lengthening will still be on Friday and he will be in the hospital through the weekend, but should be feeling good again by next week.

I could go on and on about how this really complicates things for us, but I'll spare you. It's a huge inconvenience, but we're trying to stay focused on what's important...doing the right thing to get the best results.

On a happy note, I was the "special visitor" at Jack's school today. He invited me to school to help him share with his classmates the details of his surgery. He definitely listens to us and knows what's going to happen! His classmates asked the sweetest questions afterwards. One girl asked when he'd be back and school and when we told her he wouldn't be back until the fall, the entire class was so sad. It was very heartwarming!

We'll keep you posted if there's any more changes.

Widget

2009-05-08T06:44:00.001-07:00

Incurable Optimism

2009-05-08T06:30:00.000-07:00

Did anyone watch the Michael J Fox special on optimism last night? Wow, what perfect timing for our household!

Last night's show was about optimism and how optimists view life differently than pessimists. I've never considered myself as either an optimist or a pessimist, I've always thought I was more of a realist....sort of a "prepare for the worst, hope for the best" mentality. I really recommend that everyone find the time to watch ths episode...it'll make you re-think how you think about life! One thing that MJF said last night that really resonated with me was, "Optimism isn’t about hoping for the end result. I’m content to enjoy the hope, without needing to be assured of the outcome.” AMAZING!!!

Anyway....the program was really great for Jon and I to watch, helps us to refocus on the positives.

pre-op appointment

2009-05-04T16:31:00.000-07:00

We had Jack's pre-op appointment with Dr. Kogan this morning. Jack was a little nervous, but Dr. Kogan is awesome and got him to open up a little. She spent a bit of time talking with Jack, walking him through what will happen the day of the surgery. He had written down a few questions to ask her and she answered them. I think he felt better after that and I KNOW he felt better when she sent him down the hallway to pick out some treasures out of the toy chest.

She gave Jon and I the specifics. She isn't going to do the patellar lengthening after all. This was to help with his knee-flexion. She's afraid it might complicate the lengthening process. She thinks she'll wait until after the lengthening is over to do that. His current LLD is 6 cm. The ultimate goal is to get it totally lengthened, which is ~5 cm. We're going to leave the leg a little short b/c he does limp when walking and keeping it short minimizes tripping. She can't give us a guarantee of how much lengthening we'll get...it all depends on how his bone responds to the process. The surgery itself will take 3 hours and the hospital stay can be anywhere from 3-10 days. She's guessing 3 days, but I think she wants us to prepare for more.

He'll come home with a wheelchair and crutches. That should be interesting....how are we going to keep him off that leg for a month??? If I could come up with a way to install a system of monkey bars throughout my house that would be perfect! He could just swing Tarzan-style throughout the 1st floor!

On the way home from the appointment, I asked Jack what he thought of not having to wear a big shoe lift once this is over. His face lit up, he is thrilled with the thought! He loves flip flops, and is always jealous of Max because Max wears them all summer long. I told Jack I'd buy him a pair of flip flops in every color. He liked that idea. I did too. In fact, I think when this is all over I just may treat myself to a pair in every color too.

After the appointment, Jon and the boys went to LegoLand. I was under the impression that my living room is LegoLand, but apparently I am mistaken.

Who would have thought???

2009-04-30T17:40:00.001-07:00

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

2009-04-28T06:50:00.000-07:00

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

2009-04-23T07:13:00.001-07:00

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

2009-04-22T08:05:00.001-07:00

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

2009-04-12T19:09:00.000-07:00

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.