This is a living document of what Drew has endured in his journey to walk meaning that it is frequently updated with new events and details. The brunt of the process has already been completed and successful, but we still regularly visit Dr. Paley for progress checks and tweaks to Drew’s legs.
We pursued many orthopedic specialists to correct Drew’s legs before we found Dr. Paley in Florida. Dr. Paley seemed to be the only surgeon who had the skills to correct Drew’s legs to allow him to walk. So, in April 2012 we packed our stuff and drove to West Palm Beach, Florida for a series of surgeries. We didn’t quite know what we were going to get into, but what mattered most was that Drew would finally get the opportunity to walk and we were ready to do anything to make it happen.
Knowing we had some serious surgeries coming up, we did what we could in the days leading up to the surgery to allow Drew to enjoy some last bits of normalcy.
Before having his first leg surgery, we had to have one final check of his heart.
Then it was time for the big day.
He was in the ICU for three days, but was very excited to finally come home where we had a celebration planned for him. And, from there we did what we could adjusting to our new way of life.
His new fixator made for a lot of changes in our life. He couldn’t be submerged in water with the fixator so baths were done on the couch with damp washcloths. And, we started physical therapy to prevent tightening muscles and to promote flexibility. It was very painful for Drew, both baths, which included cleaning the pins, and therapy.
To say it was difficult is putting it lightly, but we did the best we could to make this as easy on Drew as possible. We took him to a few places to try to brighten his spirits and tried to enjoy some of the benefits of our new Florida home. And, loved ones from home sent cards and gifts for Drew so that helped too!
Pretty soon, it was time for Daddy to fly back home to Kentucky to return to work. Mom and Drew stayed in Florida and we would Skype with Yaya and Grandad on occasion.
After a few weeks of doing adjustments on his fixator, we began to see some improvement.
We adjusted Drew’s struts daily, gradually straightening and correcting the rotation in his leg. It was very painful for Drew. Cleaning the pin sites was even more stressful for us all. And, Drew underwent extensive physical therapy three times a week. There were many bad days but it was all for the greater good. We looked forward to the end of it all, but we still had a very long, arduous road ahead of us. But, we just carried on with our new lifestyle.
Don’t let these smiling photos fool you. This process was very difficult and Drew and I were in tears a lot of the time. Drew experienced some of the most terrible pain that I’ve ever had to witness and can only imagine what it was like for him. Some of the pins that impaled his legs were the diameter of a #2 pencil. They pierced his skin, muscle and secured into his bones at various angles, some going complete through and through. Each pin site had to be carefully cleaned and any movement of the surrounding skin tugged at his open and sensitive sores. When your young child is in pain and begging for mercy, you don’t just pull out your camera. I just wanted to hug him and take his pain away. And, I never wanted to see his broken down miserable eyes full of tears ever again. We balanced our misery with fun things to do to stay sane, but once we got home, the camera was put down.
Drew’s leg continued to get straighter.
After 11 weeks of painful adjustments, Drew’s leg was finally corrected. It was a glorious moment when Drew stood on his new straightened leg for the first time. It was the tallest we’d ever seen Drew! After a three month stay in Florida, we were finally ready to come home for a short period of time. Yaya, Drew’s grandmother, flew down to help with Drew on our road trip home. Daddy had previously returned to Florida for a few weeks and returned once again to work so Mom, Yaya and Drew made the trek home with Drew in tow. He still had his fixator to allow his bones to fully heal after such a massive correction.
While back in Kentucky, we tried to make do with our new situation. We visited friends and visited school. Some friends even came and played a concert for Drew to help raise money for all of our expenses.
Before long, we had to return to Florida to continue Drew’s journey. Now that Drew’s right leg was fully corrected and healed, it was time to have his fixator removed. Right before the surgery, we took Drew on a fun little adventure in Florida and enjoyed some things, like swimming, that he’d have to take a break from while he had his cast. Yaya and Grandad came down to be with Drew too.
Drew’s right fixator was removed during surgery and a spica cast was placed. He wore it for 6 miserable weeks. The spica cast presented a whole different level of difficult because the cast prevented Drew from sitting up and with his leg in the immobile position, it was very difficult to carry him around. But, we managed to maintain our sanity and it was removed and Drew was then fitted for a long leg brace on his newly straightened right leg. The best part was Drew finally got to take a real bath! The evidence of Drew’s painful ordeal was evident on Drew’s leg which was marred with scars. Daddy continued his back and forth trips between Florida and Kentucky in order to continue working and spending as much time with Drew as possible.
Before we knew it, Drew was back in surgery again, this time to start the correction process on Drew’s left leg. A fixator was placed onto his left leg and just like with his right, we did daily adjustments and physical therapy.
We had been through this before on the right leg so we knew what to expect, but there was something different about this new fixator. Drew was experiencing unbearable pain and things just seemed so much harder. Drew’s foot and leg changed dramatically, looking red and angry. After a few weeks of scratching our heads, we were devastated to find out that we had been turning Drew’s left foot the wrong way. A clerical error produced an adjustment schedule that created so much additional pain for Drew. It was quickly corrected and to our relief, Drew’s pain subsided.
As if we didn’t have enough going on, we were surprised to find out that Drew would soon be a big brother!
Our life was dramatically different than we previously enjoyed, but we did our best to make it work. We celebrated Christmas in Florida which was much different in the warm sunshine and shorts and flip flop wearin’ weather. It was a nice change from the biting cold winters of Kentucky!
After the little setback, things improved. But it wasn’t long before we experienced another devastating blow. Drew’s right femur was fractured during a routine stretch during physical therapy. At this time, the surgical correction on his right leg had already been completed. Drew had put in many hours of exhausting effort to regain strength and had, in fact, stood for the first time with two relatively straight legs in his life. An hour later, all of that work was lost with the fracture. Drew was immediately rushed to surgery to repair the break. If we thought that life was complicated with the fixator, it only got exponentially more complicated with a fixator AND a spica cast. We were all pretty miserable.
Drew’s 5th birthday was just a little bit different than your typical birthday. But, we celebrated with cake and presents anyway.
After 17 weeks of adjustments, Drew’s left leg was fully corrected. Drew’s right femur was healed and he was once again cast-free. He had to continue to live with the fixator on his left leg until enough time had passed to allow the healing process from the weeks of adjustments to finish. We returned to Kentucky for another break, but it wasn’t really a break because he still had to complete daily physical therapy to continue his progress. Pretty soon, Drew was standing with the help of a shoe I adapted to compensate for the added length of his left leg due to the fixator. When he began to show the ability to walk, we got him a gait trainer to help support him. And, once it was time, we, again, returned to Florida.
Back in Florida, we jumped right in to have his left fixator removed. After a year of wearing this cumbersome, heavy, and barbaric device, it was a relief to see Drew’s straight legs. A cast was placed for six weeks while we waited for the wounds to heal. Then he was fitted for another long leg brace on his left leg. It wasn’t long before Drew was standing thanks to the work done in therapy.
Drew had his last surgery on Monday and then four days later, I went into to the hospital for our planned delivery of our new bundle of joy!
Finally, after fourteen months, Drew’s surgical journey was complete. We returned to Kentucky and continued physical therapy there. It took a lot of work, but in September, about eight weeks after Drew’s last surgery, Drew walked all on his own for the first time in his life. It was a momentous occasion that was full of relief, joy and celebration. Drew had gone through a lot of pain and stress and we as parents went through a lot ourselves while we supported Drew and all of it was validated when Drew took those first steps.
Drew continues to go through physical therapy multiple times a week. Therapy is a combination of stretching, exercises and walking. Even a year after his last surgery, physical therapy is a part of his every day life.
Drew is a complete different boy in a good way thanks to the corrective surgeries. Before the surgeries, he was famous for what I affectionately named, “the booty scoot”.
He went from wheelchair-bound, hopping on his butt to walking. It was truly a miracle. Drew has come far since the beginning of his surgeries. He is now more independent than ever. He is doing things he never got to enjoy before.
The difference in before and after is remarkable!
He has since returned to school as a kindergartener. He still uses his wheelchair on a very minimal basis, but mostly uses a walker for long distance or outdoor activities. He still has one more very minor surgery on his left leg to expect next summer and we travel to Florida twice a year for a routine follow-up with Dr. Paley. He wears his long leg braces pretty much all day only removing them for bath and therapy.
But, our hope is to one day be free of the braces as well. We’ll see how that goes. But, it’s a small sacrifice for what Drew has accomplished. I’ll never be able to thank Dr. Paley and his team enough for what they’ve done for Drew!
Even though the major portion of the surgery process is completed, we still frequently visit Dr. Paley for regularly scheduled follow-ups. We visit Dr. Paley every 3-6 months so Dr. Paley can continue to evaluate Drew’s progress.
In April 2014, we took our second trip to see Dr. Paley.
In July 2014, we took our third trip to West Palm Beach. Drew had to undergo a seventh surgery to correct rotation in his left foot caused by the bones failing to fuse back together after removing the fixator almost a year earlier. In order to fuse them back together, Dr. Paley installed an internal fixator. He also decided to place an 8-plate on the end of each femur to correct some curvature. Afterwards, Drew had the coolest cast painted by moi! I accidentially locked Holden in our rental car – in 90 degree heat!!! Thank you to the fireman and police to come save him and bonus for not having to break the window!
In October 2014, we took our fourth trip to West Palm Beach. It was a routine appointment and were asked to come again in three more months.
February 2015, we took yet another Miracle Flight to Florida to see Dr. Paley.
In July 2015, another follow-up visit with Dr. Paley.
Drew continues to have braces adjusted for comfort and growth.
All and all, all the heartbreak, all the pain, the stress, the misery…it was all worth it. As of October 2015, Drew is walking and “running” and he even joined a soccer league and enjoyed laying defense and goalie. He uses his power wheelchair very minimally, only for long trips like if we were to go to a zoo. But Drew is capable of short shopping trips, getting around at school and playing with friends outdoors. These things would never have happened without Dr. Paley. There were countless moments that I cried in sadness and anxiety for Drew just praying that this wouldn’t all be for nothing and I’m relieved to say that it’s the best things we’ve been through and Drew is much happier for it!
In May 2016, we started yet another corrective process on Drew’s legs. Over the previous three years, Drew lost extension in both legs due to some unexpected lengthened periods of time without his braces. So, Dr. Paley planned a series of three surgeries to once again straighten his legs.
We drove down to West Palm Beach to start our stay in our beautiful condo in nearby Palm Beach Gardens.
Dr. Paley planned to insert rods in each leg, one at a time, that will straighten his legs. He’d wear the rods for 6-8 weeks and then they’d be removed. While he wore the rods, Drew was not permitted to weight-bare which was tough for an active 8-year old! So, we decided to have a little bit of fun at an arcade before the real work began.
Drew needed a platelet transfusion before surgery which was unexpected for us since his levels have been consistently high. But, they transfused him and prepped him for surgery.
It was a tough surgery. He was in the operating room for six hours and he was very sensitive to movement afterwards. But, with care to his leg, we tried to grow accustomed to our new lifestyle and tried to make the best of it.
Before we knew it, it was time to put the next rod in. Drew received another transfusion immediately before surgery, but this time he was only in the operating room for about 4 hours. After about a week, Drew was allowed to remove his dressings and he was the new owner of some of the longest scars I’ve ever seen in my life.
Though Drew was quite sensitive and required delicate care, we did manage to enjoy some time in Florida.
Drew was fitted for new braces for his newly straightened legs.
Finally, after about 10 weeks, it was time to take the rods out.
And, immediately afterwards, he started physical therapy.