I usually reserve posts for when I’m feeling inspirational or have a strong, thought-out opinion about a matter, but this time I’m just going to document some events that have occurred over the summer. Typically, I dislike the “reciting a series of events” style of writing, but my hope is one day that Drew will go back to the very beginning of this blog and read every post and marvel at his literal biography. And, I know this serves as an effective tool to solidify all of the precious memories that may have gone unforgotten if it weren’t for this journal.
It has been a good summer for Drew and less than two weeks until the start of the 2017 school year. Drew will say he’s not happy about school restarting, but I know he is. There is nothing he likes more than being surrounded by friends – regardless of the environment.
He’ll be starting the 4th grade in August. My, how time flies. I still remember his very first day of preschool – he still looked like a baby and he was well known for his “booty scoot”. Ten leg surgeries and many additional surgeries since, he now walks from classroom to classroom.
I kept his schedule pretty busy this summer starting with a day camp at a local children’s museum where they created art with various mediums. He’s currently attending a second day camp in the same museum, this time playing private investigator in a “spy” themed camp.
This summer was the first time he’d ever attended a camp away from home as well. Two years ago he attended a weekend camp at The Center for Courageous Kids, a place about 2.5 hours from here that has camps dedicated for numerous conditions like diabetes, autism, hearing loss, many others and physical disabilities. Last time, the entire family stayed at camp participating in all of the activities, but this year we were brave enough to let Drew attend a 5-day camp without his family. It was his first time in any kind of situation for an extended period of time without Mom or Dad or any close family member familiar with his specific needs.
Of course, I was nervous. Drew’s needs are so extensive and are they really equipped to deal with one who requires so much assistance? But, they assured me they have a full medical staff and handle all different kinds of physical needs. So, after I hand-wrote a letter detailing his every need and giving the counselor a Drew 101 orientation myself, I was confident he’d be OK.
Then came the hard part: saying goodbye. Drew was probably a little overwhelmed suddenly being thrust into this far-from-home-away-from-anybody-he-knows environment and as much as he was looking forward to camp, it suddenly hit him that he’s going to say “bye” to Mom and Dad. I kept my wits about me while I consoled and reassured him, eventually having to walk away as he cried and the doors closed between us. I must have cried for the first hour after walking away and the entire night I was uneasy and longing to reach out to him.
We were allowed no contact: no phone calls, no email….they would call us if they needed anything. We were only allowed to write letters which I and his grandmother had pre-written a letter for each day that we sealed in an envelope and I provided with the counselor to deliver one as if it had come in the mail.
I was better the rest of the days, comfortable and confident that he was having a good time, but I could not contain my excitement the final day as I finally made my way there to pick him up. I missed him sooooooo much and the anticipation to hear how his week went was unbearable. When we finally did reunite, Drew immediately noticed that Daddy was not present as expected and when I broke the news that he had returned to work for a few days of overtime, Drew was devastated. So here I am, excited like a kid in a candy shop to hug my boy whom I’ve been missing terribly and no hug, no smile, no joyful reunion from Drew: it was tears because Daddy wasn’t there. #rejected He did eventually bite the bullet and slowly excitedly telling me about all of his favorite things about camp and he can’t even wait until next year!
Shortly after CCK, we made our…10th? 9th? I dunno….trip to Florida for a follow-up with Dr. Paley. In order to save cost and hassle, only Drew and I went while Daddy stayed home with Holden.
We flew an airline who has dirt cheap airfares, but the catch is they only fly into Orlando so we had to drive the remaining three hours to West Palm Beach. But, the awesome staff at Alamo had actually upgraded our vehicle free of charge and we drove away, much to Drew’s (and my) delight, a Dodge Challenger. I had never had the honor of driving a muscle car and the mean roar of the engine had both Drew and me smiling ear to ear. Words cannot describe to you how bad I want to peel out the tires, just once! But, I took every opportunity I had to gun it on the interstates to fully appreciate the Hemi engine and Drew loved every second of it, almost more than me!
We saw Dr. Paley Monday afternoon. I was slightly worried about how long the day would be because we had previously been scheduled to see Dr. Paley almost a month prior only to have been last-minute rescheduled due to Dr. Paley leaving the country. So, after a mild heart attack at having to reschedule the air, hotel and rental car bookings worried at the added cost as I didn’t purchase trip-cancellation insurance, I was able to rebook the appointment (with no added fees thanks to Allegiant Airlines who waived the fees due to the nature of our travel) for the day Dr. Paley returned. I was told when booking this new appointment to “expect a long wait time because it’s overbooked due to the change. But, it was actually one of the quickest visits we’d ever had with Dr. Paley.
The x-rays took the longest. They took 15-18 x-rays of both legs, of one leg, of one knee, of one of his feet, and then twist them a different way, and then x-rays weren’t clear so they reshot and then they couldn’t figure out the orientation of his knee so they twist a different way. This is normal for Drew’s x-rays. He’s a complicated case.
Our last visit, Dr. Paley mentioned the future need to do some reconstructive work on Drew’s right foot due to the shape of his foot and the discomfort he was having so I figured with all of the excessive x-rays of his foot that it would be something that was of great interest during Dr. Paley’s exam. But, in fact, it was almost blown over. In typical Dr. Paley fashion, Dr. Paley quickly expressed his delight in Drew’s legs and how well they’ve maintained since last year. He inquired about the internal fixator on the left foot (that was placed in 2014 because his tibia and/or fibula didn’t fuse back together after the external fixator was removed). He stated it was coming off of the bone and needed to be removed soon along with the internal fixators on both of Drew’s femurs that were placed after removing the rods last year. He said to reach out to the scheduler and get it scheduled soon and took a couple of steps towards the door.
I inquired about the right foot since it was of interest last time and Dr. Paley said the hook shape wasn’t a problem and with as much as Drew had been through, he’d rather just save surgeries for the really important stuff. Which, of course, I totally agree with and am relieved we aren’t looking (yet) at a life-changing surgery, but there is a small part of me that’s like, “We flew 1000 miles, rented a car, living in a hotel, and flying back all for you to take one glance at his legs and say schedule surgery soon?!? Like, can’t something important happen to make this trip seem more….worth-while?” LOL It’s not that I wish something was wrong that would have dire consequences and another need for a long-term relocation, but gosh it’s so much trouble to get here, I feel something important should happen! LMAO!!
But, Dr. Paley did say Drew can take his hip piece on his braces of during the day which he said was probably the reason Drew was getting so exhausted so quickly limiting his walking capabilities when I expressed this concern. That’s all Drew needed to hear. Trip was worth it just for that! And removing the hip piece has actually significantly improved his abilities. He walks further and faster and has even gone without using his wheelchair in activities he previously heavily relied on. The only problem is, getting the hip piece back on because the screws and the bars are stripped out so now we have to make another long trip to his orthotist to fix the issue.
Only, I’m fed up with the braces as a whole so now I’m in a pursuit to find the most advanced state of the art orthotics out there. There HAS to be something different. Something easier, more convenient, more comfortable. They make prosthetic legs that have a propulsion mechanism in it that will do some of the work for the user lessening the amount of energy the user needs to take a step allowing them to walk further with less effort. Why don’t they have something like that for orthotics?!? So, that’s what I’m looking for: something other than the go-to orthotics currently in production. I’m going to find that engineer out there that can make Drew braces that are comfortable, functional, perhaps address some of the issues he has like being unable to stand up from a sitting position due to the need for his legs to be locked straight, and some easy way to attach and detach his hip piece with a single flick of the wrist or something. Currently awaiting an appointment in Louisville with a new orthotist in hopes they know of some innovative solutions.
So, he’s been walking much better without the hip piece. His endurance is tripled and his speed is unlike before. He’s actually going long periods without his wheelchair and finally starting to see him up and moving around. I didn’t realize what a hinderance that hip piece was!
Anyways, I digress….back to the doctor appointment…
None-the-less, surgery is scheduled for mid-October and I’m pleased to say we managed to get it scheduled on Drew’s fall break so it is my goal this year to have Drew have perfect attendance because that would be miraculous! Between the relocations to Florida and distant doctor appointments and surgeries, Drew has never missed fewer than 10-12 days of school each year.
But, now this issue I’m struggling with is who will escort Drew to Florida in October? To be fair, it should be Daddy because even though we’re in Florida for a doctor appointment, we always make a point of finding something fun to do (like I did this time: we went to the beach Monday morning, we saw a movie and we ate at Dave & Busters in Orlando before we left) and I know Daddy would appreciate the quality time with Drew too.
But I hate to miss one of Drew’s surgeries. It pains me to not be there. As confident as I am when he’s under anesthesia, there is still a tiny lingering fear anytime any kid is put under…especially one with a heart condition…so I long to be close so information is relayed directly to me quickly.
And, Nathan would keep me up to date, but he’s a guy so his details would be short and concise and I wanna know EVERYTHING….like, tell me about the expression on the doctor’s face: did he look happy or tired or a hint of worry? What about his tone of voice…and exactly how long after Drew went back did you see him? And what was Drew like? What were his first words when he came too? And all of these tiny little details I’d want to know, but he’d never think a second thing about them meanwhile I obsess over the tiniest little things when it concerns my kids. I would basically want to be able to experience it through words and vivid descriptions, but Daddy isn’t a writer so he’d say, “Drew is out of surgery. He’s fine.”
We could all go, but the added money….oy! And Holden on a 2-hour plane ride? Double-oy! He’s flown before with no issue, but he hasn’t been with us on a trip to Florida since he was a quiet and cooperative toddler. Now, he’s sassy and an explorer and hates to be held down and has opinions and a very loud angry voice when he doesn’t get his way. The added stress just isn’t palatable.
For now, I’m going to relent and let Daddy take Drew, but I secretly hope something happens in the next few days before I book everything that makes it impossible or just wiser for me to take him.
Also this summer, Drew finally got his first bike! It is awesome! He’s only ridden it a handful of times because it’s, like, 147 degrees outside and the poor thing sweats when he colors with crayons indoors (no lie) so it doesn’t take long before he’s worn out riding the bike. For now, he just requires some practice and strength-building as he hasn’t had therapy since February so getting his legs back into the flexing and straigtening motions as well as the strength to propel a heavier-than-average bike is slow going. For now, we’re practicing on our driveway and occasionally at his grandmother’s straight neighborhood street.
Also, I got the bright idea of considering a service dog for Drew. This happened because it had just occurred to me that everytime Drew needs something from the floor, one of us has to get it: Mom, can you get me that stick? Mom, can you get me the ball? Mom, I dropped pencil. He is unable to grasp anything on the floor unless he’s sitting down and once he’s sitting down, he can’t stand back up without assistance. So, if we’re playing Frisbee, anytime he drops it (which is 97% of the time), we have to run to him and pick it up, hand it to him. If he’s sitting in his chair and drops something, we have to pick it up for him and hand it to him. A hundred times a day.
Also, in the mornings, we’ve permitted him to turn his TV in his room (that he recently got) when he wakes up in case everybody else is still asleep. But, my bedroom is right on the other side of the hall from his and both of us sleep with our doors open (him because he doesn’t like complete solitude and me because I need to hear him if he needs his blanket readjusted – 2x every night – and Holden also wakes in the middle of the night and comes to my room to finish sleeping in bed with me). So, the TV wakes us up thus losing the luster of “allowing us to sleep in a little.” Now, wouldn’t it be nice if Drew could get out of bed and close his door (or turn his box fan off for a quieter room thus easier to hear TV)? Well, it would be nice…only he doesn’t sleep with shoes on and he can’t walk in plastic slick-y braces on a slick hardwood floor, can he? Wouldn’t it be awesome of something can close the door for him? And then reopen it for him?
So, not sure why I had never considered a service dog before. Obviously, he’d be a great candidate for one. So I start the research. And, I quickly realize why: the prices range from $20-$35K. Insert wide-eyed emoticon here followed by a defeated slumped emoji. Perhaps they have organizations that donate dogs, but I couldn’t find one that didn’t involve the family fundraising for the cost of the dog and I don’t think fundraising is an option for us anymore as I think we have over-asked our community and our continued begging for more money and services that other people need too might not be well-received.
So, there’s that.
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