I know it’s been an unusually long time since my last post. It’s definitely much harder when school is out finding lengthy periods of time in which I can escape to my laptop in another room, thanks to a nosy 4-year old who is obsessed with tapping the keys of said laptop whenever he’s in presence of it. It’s not very often that both boys are simultaneously adequately entertained, fed and all needs met thus allowing me some spare time to come type out my thoughts. And, of course, almost immediately upon starting to enjoy my own personal quiet time it becomes a little too quiet in the house and every parent knows the consequences of too quiet. Thoughts of blood, and bones and kidnappers and fire break my concentration. And, despite my feeling like the entire house is about to collapse from whatever apocalyptic chaos is ensuing without my supervision, the boys are actually well-behaved and oblivious to my disappearance.
Like I said, school is out and summer vacation has officially begun. Drew finished third grade successfully and despite missing almost two months of school thanks to last summer’s surgeries extending our summer “vacation” and three weeks of Drew’s therapy in Florida, he made straight A’s throughout the entire year.
Daddy’s departure back to work a week after school ended was a little intimidating now I would be at the beck-and-call of both boys all by myself 24 hours a day, 7 days a week fighting exhaustion, boredom, claustrophobia, without a reprieve. But, it hasn’t been that bad so far. The boys spend a lot of time outside with neighborhood friends and I have enrolled Drew in several different activities to help fight boredom. And, today is the first time I actually had nothing planned leaving me time to come update!
Last post described my frustration with insurance having jumped hoop after hoop trying to get reimbursed for our out-of-pocket expenses for Drew’s therapy in Florida. And, I’m pleased to report that my efforts were finally rewarded with a check from our insurance company for over half of the charges. I was ecstatic!
Drew also recently had some adjustments made to his braces. His hip piece consisting of a belt around his abdomen that is connected to his long-leg braces with bars had experience a lot of wear and tear. The “tooth” of the belt had come off and been lost and we had to get creative with how to tighten the belt without the “tooth”. The bars on the sides of the hip piece had begun to tear through the weakened leather exposing the inner hardware. So, off to Elizabethtown to have a new hip piece replaced.
For some reason, I can’t remember now, they had to keep the hip piece. It was discussed to keep the entire apparatus including the braces leaving Drew unable to walk until their return, but I denied based on the fact that last year’s surgeries were a result of Drew going long periods of time without his braces and that is something I don’t wish to repeat again. So, it was decided to take the hip piece off of the braces and allowing him to keep his long leg braces in the meantime.
At first, it was difficult for Drew to walk because he’s been walking with the hip piece now since late last year, but Drew LOVED the new-found freedom without his hip piece. “It feels so weird!! But good!” is all I heard for the next 2-3 days. He could move his legs to the left, he could fit in his wheelchair better. It was like a huge weight had been lifted off of him. It took several hours before he was used to the new feel of his braces, but eventually he was up and running happily.
It was about almost two weeks before we were back at the orthotist for the replacement of his hip piece. Drew knew why we were going, he knew the hip piece would be reattached, and the expectation was clear. So, it was a massive surprise when Drew responded so shocked and distraught to having it back on. Almost immediately upon putting the braces on in their original form, I could tell in Drew’s face that he was not happy. And, if I thought he wasn’t happy then, when he stood up for the first time, all hell broke loose. His reaction was so quick and unexpected, my head was spinning. Tears streaming down his face, face contorted in discomfort and anxiety. I, thinking something is pinching or rubbing or set incorrectly, kept insisting that Drew give us specific feedback about what exactly needed to be adjusted to make it comfortable for him. He’s been wearing the braces with the hip piece for almost a year without complaint, and yes, he did have a short spell without the piece, but it’s just like it was before, right? Wrong. Between gasps of breath and in that whiny voice that flips that switch in my mind between functional and insane, Drew didn’t like having the hip piece back. Nothing needed adjustments, nothing was pinching, nothing was rubbing, but he was just mourning the end of his freedom without the hip piece.
OK, ok, understandable and I’m not too worried about his sudden inability to walk well since it only took him at most a day to get used to walking without the hip piece. I don’t object when he requests to use his wheelchair to walk 25 feet into the restaurant or the 30 feet to the front door when we get home. He just needs more time. I even indulge him and bring his urinal too him for peeing the first day instead of making him walk the 15 feet to and from. Day 2: still refusing to walk. Coax him into walking to the bathroom, which he does, but by the time he walks 15 feet, Drew complains of his legs being too tired and can barely make it back to his chair before being utterly exhausted. We go outside to play with friends, where just a couple of days before he was playing baseball and running the bases, and he spends the entire afternoon in his wheelchair never once climbing out of the chair to join the kids in their antics.
It really bothered me to see Drew so severely restricted by this hip piece. I should have NEVER agreed to let them keep the hip piece. I think there were talks of just repairing the hip piece, but when the hip piece was returned, it was, in fact, an entirely new hip piece so now I’m a little upset that he went that time without it when he could have just kept it until this new piece arrived and quickly replaced without ever having to exist without it thus never knowing how angelic life is without it. Had I known how this impact Drew, I would have made different decisions. But, exactly what? How could I have known?
So, it’s been four days and Drew still really hasn’t gotten back to his normal self. And, this week he’s going to participate in a day-camp at a museum and I’m a little anxious about how successful it’ll be. Will Drew’s wheelchair fit in all of the places they’ll go inside the museum (it’s in an extremely old building thus not the most handicap-accessible place)? Now that Drew has more restrictions, he relies on his wheelchair more than ever before. Will it require a lot of standing or walking, in which the wheelchair wouldn’t accommodate?
Daddy suggested to remove the hip piece each day to maximize his independence. At first, I was resistant not wanting a repeat of having it put back on.
“No, he got used to it without the hip piece and having it back on was a nightmare. He’ll get used to the hip piece again so I don’t think it’s a good idea to change it once he’s back to normal.”
But, now I’m second guessing myself. If Drew gets the idea that we’ll remove the hip piece “because it’s too hard”, then he won’t be above playing that card every chance he gets. And, he does need to get used to wearing it again.
That is at least until we can revisit the hip piece requirement with Dr. Paley in a couple of weeks which I plan on doing now that it has proven a real issue. But that is still two weeks away and I still have to worry about this week and the museum being able to meet his special needs.
In other news, we are within a week of receiving a new bike for Drew. If you recall, Drew rode a bike for kids with special needs for the very first time in his life in January during his special therapy which was monumental. So, I immediately applied for a donated bike through an organization, but, never being one to win anything, we were unfortunately not selected. Sure, there are a lot of other organizations out there that could help, but that would take time and denial after denial and we really want Drew to have this bike for summer.
So, I reached out to Freedom Bike Concepts myself and managing purchasing the bike ourselves. I have previously been resistant on sharing the full cost of the bike for fear of it being stolen and for fear of appearing to have so much money lying around we can afford this bike as we have fundraised in the past to cover medical expenses. But, truth be told, half of the cost went on a credit card and the other half is being financed through the company over the course of a year on a different credit card. And, one reason we can kinda sorta afford the bike is due to the aforementioned reimbursement of the therapy charges which we were able to use to pay off the first credit card thankfully eliminating any interest that would have been paid on the bike because, believe me, we didn’t want to pay one more dime for that bike than absolutely necessary.
We tried to see if insurance and/or Medicaid would cover the bike, but that was a no go. Expected. So, the bike costs between $4500-$4800 or somewhere close. One price was quoted to us, but then it was determined that Drew needed a different braking option which was an extra $300. Yeah. It’s being shipped from Canada and the freight alone is over $300. So, in other words, we are paying significantly more for just the brake option of Drew’s bike that a typical American family pays for a typical children’s bike. And, we’re paying more in shipping than what we’ll spend on Holden’s bike whenever it is he gets one. So, once Drew’s bike gets here, Drew is going to be eating, sleeping and existing on this bike for all time! lmao!! He’s going to be 50 years old one day and I’m going to constantly bring up purchasing this bike in order to convince him to do things for me.
“Drew, will you do my grocery shopping for me? My knees are just too weak from this weather to make it out by myself today.”
“Mom, I have a lot of work today…”
“Son, we paid almost $5000 for that bike. Don’t be ungrateful!”
So, we can’t wait to see it!