Another trip to Cincinnati over and done. Getting back into my truck for a lengthy drive wasn’t exactly what I had hoped so shortly after returning from Florida, but I managed to bear with it. Even as I drove the whole trip with wet, cold shoes since we spent a couple of hours playing in the yard damp with a recent rain with the boys. When we arrived at the hotel, we were bummed to learn that the outdoor swimming pool had just closed THAT DAY (argh!!! If we were in Florida, we’d be swimming outdoors for another few months!) so we tried to think of what to do since we got here so early. I didn’t want to go anywhere because have you ever worn cold wet shoes? Ugh! So, we decided to rent a movie On Demand on the hotel TV only to discover they wanted $17.99 for not even a new movie!!! So, go somewhere it was! We walked to a park down the road and played around for about an hour. Finally we returned to the hotel and settled down for the night.
Drew’s hand appointment in Cincinnati went well. I bought some hideous shoes in the gift shop after having caught a whiff of my still damp shoes because I couldn’t bring myself to be in a 12′ x 12′ exam room with another human being and subject them to that torture. I had been a little anxious about seeing the surgeon and therapist because with all of the happenings over the summer surrounding Drew’s legs, Drew’s hand therapy and scar massages had kind of gotten pushed to the back burner. Over the summer, Drew’s scar started to redden once again and grew thick raised scar tissue which I knew was not good and since we slacked on doing daily thumb exercises, I knew his thumb strength wouldn’t be near what we envisioned at this point in time again. So, it was, again with a cowering downward glance (remember when I was worried I had screwed the whole thing up with the homegrown cast rewrapping?), that we met with the surgeon to discuss progress.
Surprisingly, the surgeon was still pleased with Drew’s thumb, though he did agree the scar needed some attention, but there was no condemning lecture about neglecting Drew’s needs nor a public flogging for ruining his precious work! We discussed how the new thumb benefited him to gauge whether Drew was happy with having gone through the procedure, but unfortunately, because of the restrictions of activity due to not being able to weight-bear throughout the summer, we didn’t really have a lot of experience with using his new thumb as he would if his summer had been more traditional.
Drew did say he was glad it was done and feels as if it was a good thing to do, but when Dr. Cornwall asked if he liked it so much he’d want to do it on his left, Drew gave an emphatic, “no!” I was slightly embarrassed because I feared that Dr. Cornwall would get a mixed message about how happy Drew was with his right thumb. But, honestly, I believe that it was the pin that was placed in his thumb during the surgery and then having it pulled out that I think soured the whole experience for Drew and if it weren’t for that one minor feature, Drew would have no qualms about doing it on the left. Just like with his leg surgeries, he’s OK with doing the leg surgeries as long as he knows he doesn’t have to get a cast. If a cast is involved, the entire experience from beginning to end is tripled in anxiety because he anticipates it being sawed off.
We aren’t considering doing it to the left anytime soon. He actually has pretty good movement in his left thumb anyway unlike the right, so should we do any corrective surgery on the left, we might go a different direction to keep the thumb. And, we’ll let Drew decide when and if he’s ready for that.
After seeing Dr. Cornwall, we were relieved that the occupational therapist, which we were scheduled to see two hours later, would actually be able to squeeze us in immediately after. She examined Drew’s scar and encouraged us to recommence the thumb massage, but thankfully we still have time to improve it as it takes a year for a scar to fully mature so it wasn’t too late to make it better. She made him a new insert for his hand brace since the last one was worn. It also helps with the scar massage at night as it applies gentle pressure to his scar while he wears the brace. She instructed him to perform a series of thumb movements and measured his range of motion and there were improvements on every motion. And, to measure his grip strength, she had him squeeze a device. Prior to surgery, he couldn’t squeeze it hard enough to even register a number, but this time it actually registered! So, we were excited about that.
We were to discuss adaptive devices to assist with self-care, but she felt that he didn’t yet have the grip strength to try any devices yet. So, we’re hitting the hand therapy hard for the next month and we’ll return to Cincinnati AGAIN (sigh…) for another visit.
In other news, we are making preparations to enroll Drew in a specialized physical therapy program. Drew has undergone hundreds of hours of physical therapy throughout his leg correction process dating all the way back to 2012. Physical therapy is a struggle financially because our insurance coverage limits aren’t even in the same ballpark as what is necessary to recuperate from major corrective surgery. Constantly, we exceed coverage limits, beg for more covered sessions, get denied, file appeals, get a few extra sessions, and incur out-of-pocket expenses eventually.
Its incredibly frustrating to have these coverage limits placed upon Drew whose surgical experience is much more extensive than the average knee repair. First, his surgical correction process takes months at a time, not just one surgery. He exceeds the limits of PT sessions in a shorter period of time than what it takes to even get ONE leg in a condition to even weight-bare, much less walk independently.
For example, in 2012, he wore an external fixator on his right leg for four months to correct the rotation and straighten his leg. It was surgically placed in May 2012, over the next 11 weeks, we made daily adjustments to the struts to straighten and rotate his legs like braces do on teeth, and then it was removed (four years ago today, in fact.). During this entire period, he had to undergo physical therapy. FOUR MONTHS. We have 30 days (which is a month – 5 days a week for 4 weeks) of PT sessions. Only one month of coverage for a process that took FOUR MONTHS. AND THAT’S JUST ONE LEG!!! It took seven months on the left!!! And, even after the external fixators were taken off and Drew’s legs were perfect, it took another THREE months for Drew to even walk for the first time (not only was he regaining strength and range of motion from months of not using his legs while in the fixator, but he had to learn to walk for the first time – EVER).
So, Drew, having to go through four surgeries just to get his legs to look like ours only qualifies for the same amount of therapy that you would need if you twisted your knee and snapped a tendon. Frustrating.
So, continuing with traditional physical therapy may not be an option for us. He’s exceeded limits before and because of financial limitations, we had to discontinue PT. Luckily, PT was only supplemental at that time (he had made tremendous gains in his recovery and PT was only maintaining current level so aggressive therapy wasn’t needed.) But, that’s not a decision we can make this time.
I learned of a specialized physical therapy program though a fellow TAR mommy whose son also sees Dr. Paley and has undergone a lot of the same surgeries as Drew. It’s four hours of therapy per day. Five days a week for three weeks. When she first told me about it, I thought it was ludicrous. FOUR HOURS A DAY?!? But, he went from not being able to stand or walk at all before this therapy, to walking ON DAY EIGHT. Walking in 8 days. It took Drew three months.
I’m really excited about it. I think it would be great for Drew as traditional therapy is great for “traditional” surgeries, but Drew is no traditional patient and this therapy is designed for kids with genetic conditions. I’ve only casually mentioned it a few times up until now because I’m kind of leery about people’s reaction to it. I don’t mean about the physical therapy itself. I mean, the location. Let me explain.
Whenever new people learn about our travels to West Palm Beach for Drew’s surgeries, they always say something to the effect of, “Oh, that must be nice to get to go there!” It’s a judgement that a lot of Paley patients experience. It’s perceived as a luxury or vacation time when it’s anything BUT. I’ve been asked multiple times why we don’t see a doctor closer as if we’re choosing for the fun of it to travel 1000’s of miles, take time off of work, triple our expenses, etc. The truth is, when you have a child with extensive medical needs and rare conditions that haven’t been seen by the majority of the medical professionals, you have to travel far to find someone who is qualified to treat your child.
So, it’s with the same dread that I reveal the location of this specialized therapy that we want to enroll Drew. I can already anticipate people’s reactions because I can admit, it does sound suspicious. Not only am I going to have to shield off side-eyes from people pondering our trips to a place with Beach in the name, but now it’s going to be even worse. So, are you ready? Ugh…I’m more nervous than I thought. So….it’s…….in…..Orlando. WAIT A MINUTE!! Before you think anything. The only other locations offering this therapy is in Michigan (and the time period in which we’re shooting for is in January and F@#K going NORTH for the winter…I can’t even deal with Kentucky winters) and overseas.
Here’s another stressor: They don’t bill insurance. All expenses have to be paid up front. $2000 deposit to reserve the time slot and the remaining balance is due 4 weeks prior to the first session (for us that would be due in mid-December). We can submit paperwork ourselves to insurance and seek reimbursement, but even then, we’re still limited by the allotted coverage limits so we stand to only be reimbursed some of the expenses. We’re shooting for the very first session of 2017 in hopes of still having a large portion of physical therapy sessions to be covered (we don’t want to run out before starting this therapy) to maximize how much we can get reimbursed.
Also, to be completely honest, the three-weeks ends three days before Drew’s birthday so I do think that it’s state law or something that if you’re in Orlando near or on your birthday and you have endured 20 surgeries and just completed 4-hour a day therapy five days a week for the last three weeks that you are required to visit Disney World. It must be a law or something and I ain’t tryna go to jail. 😉
So, the way I see it is: We could spend the next year fighting the insurance company and enduring God-knows how much in out-of-pocket expenses for MONTHS of traditional physical therapy and accomplish goals, or we could complete THREE WEEKS of this specialized physical therapy and EXCEED goals. I absolutely feel that this physical therapy is necessary. Drew is special. He is unique. His fight is different and he has so much more to overcome. He needs a service that suits his unique and comprehensive medical needs.
I feel like I have to put this all out there because we are, once again, doing some light fundraising. Nathan is going to work as much overtime as he can possibly get in order to save money but those days aren’t guaranteed to be available. But, to supplement our savings, I have reinitiated Drew’s GoFundMe campaign. Please share this campaign and, even better, donate. We’d really appreciate it. We do plan on seeking reimbursement after the physical therapy and we will choose an organization/person/cause to donate whatever we get reimbursed. So, your donation will not only help Drew, but you get a two-for-one deal because a portion of your donation will also help another.
A local friend has also graciously offered her services as a Scentsy consultant and for the month of October, will be donating a portion of her profits to Drew. Scentsy offers fragrances in forms of candles, burning oils and all kinds of products. You can make a purchase through www.slingingwax.scentsy.us and a portion of your money will be donated to Drew. The products can be shipped to you from Scentsy. I urge you to take a look and if you know someone who is a die-hard Scentsy fan, refer them to this consultant’s website to make a purchase.
We really do appreciate all of the support that has been given to Drew and it kills me to ask for more, but I am his mama and I will do anything to advocate for his needs. We all do what we feel is best for our child’s needs; it just so happens that Drew’s needs are a lot more comprehensive.