I am kicking myself for not being as dedicated to documenting Drew’s journey with TAR as heavily as before. I was more committed to processing all of our thoughts, fears, and experiences in the previous years, but I suppose other tasks and responsibilities took over. But, now that both boys are in school and I’m trying to avoid another day of lazing around, I decided to finally sit down and update Drew’s most recent adventure: arm lengthening.
At last post, we were several weeks from Drew’s first step in arm lengthening: ulnarization on the right arm. The plan was to correct the positioning of his right wrist into a more neutral position.
So, in May, a few weeks before the end of the school year, we made our….gosh, I wish I had actually kept count of the total of trips…I’m sure some obscene number…gotta be over 30…trip to West Palm Beach. It was a much dreaded trip: not only because travelling with two young kids is nerve-wracking, but it was on the day of a pivotal episode of Game of Thrones’ final season and being the super fan I am, was forced to stay up until 3:00 am (after a full day of travel with two boys, don’t forget) to catch up.
First on the agenda was to participate as a guest at a conference for orthopedic medical professionals hosted by Dr. Paley to share and bring awareness to limb deficiency treatments and rehabilitation. Drew’s case was shared with the team since he was present for his ulnarization surgery and they got to ask questions about Drew and his medical history and observe how his surgical past was applied to him.
Before Drew’s surgery, as tradition, we did a few fun things as a family because we were in for a lot of work and all work and no play makes Drew a cranky boy! We played some golf, found an arcade and you can’t go to West Palm Beach without actually visiting a beach.
But, eventually, it was time to begin the hard work. The first step is always pre-op and Drew’s least favorite as it requires bloodwork to test his platelets. They were sufficient for surgery so thankfully no transfusion was necessary. Then ice cream at a local favorite saloon for brave boy.
Surgery was next day. The procedure was estimated to be 3.5 hours long, but when he came out pain was present, but he reassured us it wasn’t as bad as his surgeries he underwent in 2016. Though it was stated he would stay in the hospital for one night, he ended up staying for a total of three nights due to pain and swelling. It was unexpected so Daddy and Holden had to fly back home before Drew got discharged.
Then it was just me and Drew. Then, it was almost graduation time back home at school and I was adamant that Drew would get to participate in the 5th grade graduation ceremony with his peers, so we made a special trip back just in time to participate in that. But, we had to return to Florida a few days after that to get back to work. I wouldn’t normally have gone through so much effort and expense, but changing schools is a milestone and it was important for both of us to commemorate this accomplishment of completing elementary school properly.
But after a long 1000+ mile drive back home to Kentucky, I wasn’t too enthused with having to return back to Florida. Drew had his post-surgery follow-up with Dr. Paley and things looked great. Drew had a new brace on to wear at all times with exception of baths.
The brace was by far not as bad as wearing a spica cast, but it did come with its own set of challenges. The brace at the beginning was hard to adjust to. It got in the way of a few functions like playing video games and he was on strict orders to not lift anything or bear any weight so a lot of his favorite activities were crossed out. He couldn’t ride his y-flicker (scooter), driving his go-cart seemed impossible, couldn’t shoot his beloved Nerf guns, and his arm was quite sensitive to any jarring so trampolines and rough housing wasn’t good for him. It made for a pretty dull summer and he sat on the sidelines for many activities. But, he was allowed to swim with it on so we were regulars at the city pool.
Another tedious experience with the brace involved a sock he wore beneath the brace. It constantly slid down and we were constantly having to readjust it. That got annoying quickly. But, Drew did eventually figure out he could play video games with some expertise, though not as well sans brace and Drew adapted to driving his go-cart by using his left, shortest, arm. That’s the thing about Drew: if he really wants to do something, he’ll figure it out somehow!
Finally, after three months of wearing the brace, it was time to return to Florida once more to surgically remove the pins that were placed during the surgery. This time, only Drew and I drove to Florida while Daddy stayed home from work to keep Holden at home in the interest of saving money as well as not interrupting his school attendance.
Drew’s pin removal surgery went well. It was actually one of the easiest surgeries he’s had. We went back home (well, to the Quantum House) the same day. Drew did have some heavy bleeding despite a high number of platelets and tiny incisions for which we had to have the bandage changed early. But, Drew was delighted to be free from the brace most of the time. He’s only required to sleep with it on for the next 6 weeks. But he was happy to move his wrist again and has a whole list of things he was excited to have the freedom to participate in again.
I, however, was getting extremely homesick having been away from my youngest son and husband. Despite having been told we needed to stay 10-14 days post-surgery, began getting impatient. Drew was excelling at therapy, has already missed two weeks of school and so after getting approval from the clinic, we packed up our things and left a week early.
So, Drew is currently in 6th grade and at school and seems to love it! He’s glad to be back to his freedom and minimum restrictions (still no heavy weight-bearing on this wrist). Now, to get prepared for his first official arm lengthening in December! Updates to follow!