Can I brag for a moment?

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

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

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

Making progress!

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


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


The fierce competitor.






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

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

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

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

Jack, hard at work, building a castle.

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

MRI results

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

Update!

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

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

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

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

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

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

Perfecting the belly flop.

We never question his enthusiasm.

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

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

One Year Mark

May 15th, 2009

May 15th, 2010

Celebratory ice cream

Look mom, no hands!!!!

Watch out, Mia!

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

WOW!!!!!!

Dolphins and therapy!

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

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

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

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

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

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

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

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.