We just finished up our four-month stint in Florida. We survived a 990 mile, 15-hour drive from Florida to our ol’ Kentucky home.
Beginning the return to Kentucky exit plan, the physical therapy team at the Paley Institute made a series of videos to share with therapists here in order to continue Drew’s rehabilitation. Of course, we couldn’t leave without taking a group picture to commemorate our affection and appreciation for each other! We have currently used up all of our physical therapy sessions limited by our insurance plan so we ended up having to pay out-of-pocket $225.50 for our last session of PT. We haven’t heard whether or not we were successfully able to have some OT sessions transferred to PT to give us a few more covered sessions yet, but hopefully it does because we still have over three months of this year in which Drew needs 5x/week therapy to keep his momentum. Our hope is that between the added PT sessions and KY Medicaid, we’ll have enough to get us through.
Before officially being released home, we had to have a post-op follow-up with Dr. Paley. As is standard, Drew started off with an x-ray followed by a couple of hours wait in the clinic waiting room before finally being called back to the exam room where we waited for what seemed an eternity. The best part was upon setting my eyes on Drew’s x-ray for the first time, my eyes were immediately drawn to a very surprising discovery of hardware on each femur of which I was not informed. I was shocked to see two plates and screws on the femurs that were evidentially placed during the last surgery in which the rods were pulled out.
Dr. Paley eventually made his way to see Drew and he was (and should be!) very proud of his expert work as he glowed seeing Drew’s very straight legs. I asked him several questions from my prepared and neatly written out list. We learned that there’s no rush to remove the internal hardware so I expect we’ll plan that for next summer. That should be a simple in and out surgery. We also learned that Drew may not be in his braces “until growth stops” as was the explanation four years ago during Drew’s external fixator phase, but may come out of the braces if ever Drew’s legs retain their extension (the braces keep his legs extended as not wearing them for long periods of time causes his legs to flex eventually losing the ability to fully extend…thus the reason for this summer’s surgeries.)
After seeing Dr. Paley, we were officially free to go home. While we were excited to finally be at the end of this process and able to return home, a small part of me was a tiny bit disappointed that we were at the end of this process and able to return home. We swam in the community pool twice a day, enjoyed the unique amenities of Florida including exotic birds, trees and lizards, and we just generally love Florida. Not that we don’t love Kentucky, but when you live in a location for an extended period of time, it grows on you and starts to feel like home.
So, it was with mixed emotions that we spent all day Monday packing in preparation for our trek home. As we removed all of our belongings returning our condo to its original condition, I couldn’t help but recall our first days here: how we waited for the condo owner to meet us at the condo and Nathan discovered the hidden keys under the mat so he just walked in and I was nervous we had accidentally “broken in” to the wrong condo, how the first time we walked through the groups of palm, pine and unknown exotic trees in the “spooky forest” as Drew referred to it, how a tall white crane would frequently walk right outside our enclosed porch giving us a close-up view of Florida nature. I was really sad to be leaving Florida!
Plus, we had the dreadful 1000 mile drive home to look forward to…well, not so much look forward to as dread. We decided to once again leave early evening in hopes of completing the majority of our drive during the middle of the night while the boys were asleep in the back. It seemed to work well the first time.
Well, the drive didn’t go as well as the first time. Holden did take a nap, but woke only after sleeping a few hours. Nathan was so cramped that he couldn’t sleep. I drove a good 6 hours, 619 miles, from Southern Florida to Atlanta where we switched drivers. Nathan, unrested, downed a couple of Monsters and I crossed my fingers he’d be able to hang in there.
We did make it intact. Although all of us were very cranky and exhausted. I likened it to Putin, Jong-In, Assad and Obama convening in a tense meeting in which all members stared angrily, but silently at each other each ready with their finger on the red button should one so much as flinch. Nathan and I took turns taking a nap and Yaya (grandmother) who hadn’t seen us since beginning of June came over with food and snacks since our frig was empty and, of course, give out endless hugs that she’d been missing all summer.
While Nathan had been home in Kentucky a couple of times during the summer when he returned home for his shifts of work, I hadn’t been here in four months so I often found myself feeling like a guest in my own home! Walking around the house for the first time, seeing all of our old stuff, I suddenly recognized that all of the compliments of how nicely decorated our house is was actually true! I could only ever see all of the stuff I WANTED to do, but didn’t have the time or money, but after seeing my house “for the first time”, I could see that it is actually really cute! Then, when I attempted to cook myself lunch, I had to search every cabinet in the kitchen for our measuring cup. “Nathan! Where’s our measuring cup?” Like, I don’t live here! And, then, I caused some confusion when Nathan and I were arranging to go somewhere as I kept referring to taking the truck, but Nathan wondered why he couldn’t take his car. Only, in Florida, we only had my truck and had completely forgotten Nathan has his own vehicle so, DUH! of course he’s going to use his own vehicle.
A drive through town was mostly the same as small towns don’t change much, but I did notice a new logo on an existing restaurant and a completely new restaurant. But, other than that, it’s the same ol’ small town.
Our first full, rested, day home I must have made about 10 phone calls to various locations that culminated in about a dozen new appointments on my calendar: we need a new seat for Drew’s power wheelchair, had to schedule doctor appointments that should have occurred during the summer but had to be postponed, getting on the schedule at the local hospital for physical therapy, etc.
Drew finally started school going for his 1st day of 3rd grade over a month late. He was very excited to go and the welcome from the bus monitors and staff at school was exuberant!
I immediately jumped on to my task at hand: make alterations to shorts to accommodate Drew’s braces
and help alleviate some of the struggles with Drew’s bathroom needs while in them. The problem is, his shorts have to be removed for bathroom needs but he wears them under the braces which means the braces need to be removed which is a lengthy and tedious process as well as requires heavy lifting.
So, we want to be able to take him to the bathroom but not have to remove his braces. I have been formulating a plan for a few weeks as to best alter his pants so we can access the important parts. I already have a few pairs altered and I’m excited to try them out for the first time. There are lives that are complicated and then there’s altering pants that will require giving a tutorial to everybody who cares for Drew so they understand the function. Of pants. So they know how his pants work. LMAO!!
And, as is normal for us, less than a week after returning home from a lengthy, arduous and stressful summer of doctors and medical obligations in far away cities, we have yet another important doctor appointment to anticipate in a far away city, albeit closer than Southern Florida. Drew has his post-op follow-up with the hand surgeon in Cincinnati as well as a visit with occupational therapy to try some new adaptive devices to help him with self-care. We were so disoriented and exhausted from our trip home from Florida that we only, just a few hours ago, finally remembered to book our room at a hotel for us to check into tomorrow!
We’re going to see Dr. Paley for another follow-up in three months and Nathan and I are contemplating some special physical therapy for Drew which I’ll share more about another time.