Week of Progress

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!!!

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!

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

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

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!?!?!?!?

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

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???