OK, I’m not even going to start this post with some flim-flam excuse about why it’s been so long since I’ve updated – since August 2019. I’ve thought about this blog about once a week since December and tried to motiviate myself to document our goings-on as I once did so faithfully, but the motivation never came. I will deeply regret not keeping up as religiously as I used to, but figure late is better than never.
So, lets see…what’s happened since August. Well, Drew had an entire arm lengthened, we’re making major expensive modifications to our home to accommodate some of his needs, and the world practically came to an end. I expect this will be a long post.
Last I left off, Drew was post-ulnarization surgery. His right wrist was corrected to position it better and things were starting to get back to normal. Things in that arena have been uneventful. He functions well with his newly-corrected wrist and nothing really remarkable to report.
But, in December, we all packed up and moved to Florida for our third long-term stay. We left home immediately after Thanksgiving having done our Christmas celebration on Friday in order to create those important childhood memories with close family. We moved into a quaint little condo in North Palm Beach which at first I was taken by it’s charm and eclectic-design, but after a few weeks of trying to squeeze into small spaces and an unaccommodating couch or comfortable seating area for a family of four, we were quite frustrated. But, hey, it was cheap and am grateful we had an affordable place to stay for so long. I wasn’t expecting the Hilton for the price of Days Inn, but it did make us fall back in love with our large, roomy, personalized, comfortable home in Kentucky.
Our expected stay was approximately 10 weeks so we enrolled both boys into new schools while in Florida. Both of my boys have unique needs so it was quite nerve-wracking going through that process having never had to switch school systems before. Drew being in that middle school age where physical appearance and fitting in is a critical need was at the forefront of my mind. I was able to meet with staff at both schools (younger brother in 1st grade and Drew in 6th) and we worked to ensure both boys’ needs would be met. Little brother started school about a week after we arrived in Florida, but Drew didn’t start until three weeks as we waited until his surgery was complete.
The surgery planned was Drew’s first arm lengthening. A small fixator was affixed to Drew’s arm in a three-hour surgery. It went well and Drew’s pain was actually quite tolerable compared to his leg fixators. A couple of days after he was discharged from the hospital, he had his first wound check and they taught us how to make the adjustments to his fixator.
We made adjustments to his fixator three times a day with a little allen-wrench like tool that slowly extended the fixator which in turn pulled the two parts of Drew’s humerous bone apart. Surprisingly, making the turns was not painful at all. Hardly a complaint. He did experience significant pain in his back pins (the pins highest on his arm close to his shoulder), but that came from his skin getting pinched and not so much from the actual turns. In total, Drew gained right at 40 mm of length, almost two inches (I think.)
Drew ended up having different problems in school than I anticipated. Having such dramatic physical differences along with a weird bar on one arm, I thought hed struggle more with the attention from peers, but turns out that Drew didn’t really experience a lot of that (thankfully), but Drew did find that the school dynamic was much different. He was constantly overwhelmed with how little control there was amongst the students. Students were loud, rambunctious, out of control and caused major distractions in Drew’s opinion. Drew constantly complained of being emotionally overwhelmed with the level of noise and chaos he endured during the day. I guess schools in urban areas are much different than in rural with their small classroom-sizes (by comparison) and tighter handle on student behavior. Even enduring a difficult surgery and lengthening his arm, I’d say his school experience was the hardest part of the entire three months. The staff was accommodating to Drew and he always had assistance when he needed and they (and students) treated him kindly, but in order to avoid further stress on Drew, we’ve decided to just home-school for future lengthenings.
So, after 11 weeks of turns and daily occupational therapy (which Drew thoroughly enjoyed), it was finally time to return home to Kentucky and boy were we glad to be done. We drove home in one day (ugh!) and the boys returned to their very excited teachers and things have been pretty uneventful in regards to his arm. His arm is currently healing with the fixator still on his arm while his bones, which were pulled apart to create the length, fuse back together. His arm is very sensitive to touch or movement, but we generally just treat his arm tenderly and things are really just fine. We go for an xray at a local hospital once a month for 3 months and we send the xray to Dr. Paley and staff who monitor how well his bone has healed in order to plan for the right time to remove the fixator.
So, things are going pretty routine with these casual conversations and low rumble of some virus from afar and before we know it, shit hits the fan and school is cancelled for two weeks at first, then an additional two weeks, and then just called off for the year. Restaraunts close, hair salons, the entire world shuts down.
The worst part was Drew and I had a booked trip to Boston, MA to go to Ace Comic Con where we were going to meet and get autographs of our favorite Marvel celebrities: Chris Evans, Chris Hemsworth, Tom Hiddleston, Jake Gyllenhaal, Tessa Thompson and more. We were bursting inside with excitement and one week – ONE WEEK – before we were going to fly there and rub shoulders with some of Hollywood’s most lucrative stars (and where I had paid a significant sum of money to be squeezed between Chris Hemsworth and Chris Evans!!!) they were forced to cancel it due to the state of emergency and to this day, Drew and I experience extreme sadness thinking about what might have been.
Stuck inside the house with two boys 24/7. It’s not that I don’t love my boys but its different when you can pass time by going to the local park or going to the movies or taking a weekend somewhere to see something new. But now, I can’t even go grocery shopping with the boys which makes it really complicated when hubby is at work on the river. Luckily I had a friend deliver a few things and I had to eventually break a rule and let mother-in-law come stay with the boys so I can do some major shopping once a week. We’ve been in lockdown for about 7 weeks, but we’ve relaxed the rules a bit now that things are calming down (and our area has very few cases). The boys don’t come shopping with us and they don’t visit friends or have company, but hubby and I have ventured out into the world for some essentials and have allowed the boys to visit their grandparents for leisure.
There really is no beautiful transition from the apocalypse to home renovations so, moving on…
This last year has been quite difficult on hubby’s and my backs having to lift Drew in and out of the bathtub as Drew is growing like a kid often does and with that is growing heavier and heavier. With the interest of not becoming disabled ourselves, we’ve started to pursue accommodations to our home (mainly the bathroom) to alleviate some of the stress. We had someone from a local place that provides equipment come and evaluate our bathroom to discuss needs and while there are several options, the one that we feel suits us best is a special shower lift and turns out it costs around $5-$6k. Ugh! So, now we’re desperately hoping that insurance will cover the expense. Drew used to have Medicaid but it lapsed so I guess this will be a good time to go reapply. It’s just really frustrating that equipment like this isn’t more affordable. It’s not like this is luxury item. It’s a basic essential need.
Again, no transition…
We had his third xray done this last week and we just learned that Drew hasn’t had nearly enough bone growth which is not good news. We could have potentially been arranging to go to Florida to schedule the removal, but since he doesn’t seem to be growing bone, they want him to get an infusion of medication through IV. This is TERRIBLE news as Drew is absolutely terrified of needles, especially IVs. Finger sticks and vaccinations he tolerates, but IVs are a source of immense fear for him. So that’ll be on the docket soon and I’m not looking forward to breaking the news to him. He handles surgery well because they almost always do the IV while he’s sedated, but this isn’t done under sedation so it’s going to be difficult for him to endure.
I can’t promise anything, but I’ll do my best to be more timely with my posts 😉