I have to warn you, this post is totally like my brain threw up. With that out of the way, here goes.
As you may know, one of my favorite Grant memories is when he told his dad (after being told no about something), “Mike, you’re really pissing me out.”
And truth be told, I am totally pissed out myself. Today was our appointment with Riley Orthopedics. We left here at 10:15 a.m. to give ourselves plenty of time to get all the way to Carmel for our 11:30 appointment. And even with the Garmin, I got lost. Which is saying a lot. Who does that shit?
But we made it in the nick of time. To wait. Forever. And I lost my cell phone. But really, it was in the car, where it had slid to the very back on the floorboards. And I had to search frantically for it because I had typed in question for the doctor and they were in my memo app on my phone. Stupid phone. Stupid technology. Stupid Garmin. (In all fairness, I love my phone and the Garmin, and it was user error on all of the above. But I am still pissed out, so I am throwing some blame around just for the hell of it.)
We finally get into the exam room about an hour and 40 minutes later, and it goes from bad to worse. Grant and Lily, who were teetering on the edge by this point anyway, totally had meltdowns. And when the specialist finally walked in, they decided it was a perfect opportunity to begin arguing over a drawing game and literally kicking each other. Well, Grant was trying to kick Lily, and she was running around the exam table attempting to get in a few good kicks as she passed him. It was fucking lovely.
Now onto the ‘ologist. I give him props. Instead of glaring at the children or looking at me as if I am a horrible mother, he smiled and pretended all was serene. Love him for that. Then he pulled up Grant’s scans and proclaimed they were not detailed enough and we needed to redo them. So we did. Meanwhile, the children are still behaving like monkeys that have had too much sugar. Which they had not, I might add.
He begins to look over Grant’s medical history. His exact words were, “Wow, he has had a bit of a … ummm … packed health history.”
And God bless him, we recapped as fast as we could, and he got onto the nitty gritty.
What are we going to do about my kid’s jacked up spine that is growing to the side while the rest of him grows straight up?
Unfortunately, the options all suck.
So, we are going with the less sucky option. Grant’s curvature is significant at 33 to 36 degrees. His scans show that although he is already 5 foot 10, he has significant growing left to do.
The choice of “waiting and seeing” is a bad one. He and I agreed completely. To not act would be, according to him, “playing with fire.” If his curve reaches 50 degrees, surgery would be needed to prevent major health problems such as respiratory distress. And Grant is a very bad surgical candidate due to his immunodeficiency and and other health conditions.
So a rigid brace is the only option. And there are no studies on how autistic children/those with sensory disorders handle this. The specialist is worried and so am I. But there is absolutely no choice. I am going to have to rely on my peeps on Grant’s team to help desensitize Grant to the brace and to give me skills/techniques to help him as well. We will have to work up to 23 hours a day of wearing the brace, likely until he is done growing.
OMG. Deep breath.
Another twist (no pun intended) is the fact that Grant’s curve is not a typical one (why would it be?). Instead of side to side his is kinda front to back (that is totally not a proper explanation, but hopefully descriptive). I asked if that could be because of chemo/steroid use during cancer treatment or perhaps Grant’s very low muscle tone he has had since birth, and he thought perhaps the low tone could have contributed. He wants to do a full neurological work-up to make absolutely sure we haven’t missed any other issues with his spinal cord. I am totally fine with this and happy he is being so thorough. We will be doing a spinal MRI under anesthesia as soon as we can get in.
Next steps include going back to AOI, who made Grant’s shoe orthotics as a toddler. They are very skilled with scoliosis brace fittings, so that is our plan. Then, after he is in the brace for two weeks, we will go back to the specialist. At the time, we will have all of the diagnostics back and can make a plan for moving forward.
Tomorrow, I am going to know that this too we can handle. That Grant has been through so much worse and came out smiling on the other side, drawing penguins and platypuses and loving life. That he is a total rock star that rode a horse for the first time at Camp Little Red Door this week. That handles medical tests like a champ. That says he loves you even though he won’t ever remember your name. That gave every boy on Avery’s basketball team a fist bump after practice last week, yelling “You guys are great at football!”
Tomorrow, I will know that it will all be fine. That we got this.
But today … today is not tomorrow. Today I am angry that he has one more thing to deal with. And I am sad that he continues to have challenges thrown his way.
Today I am just completely, totally, overwhelmingly pissed out.