Alright….so today we are at 14 pounds of traction. I have noticed a few changes over the weekend, nothing too alarming EXCEPT THAT MY KID NOW LIKES TO HANG FROM HIS SCREWS!!! Ummmmm….yeah…that’s right. No, I’m not joking. The staff here say that Ben is quite the acrobat with his halo…yay! He LOVES doing hangy things, which in fact, makes me quite nauseous. I have threatened him that he is going to fall and knock his screws loose (literally), but I turn around and two seconds later he is hanging by his screws again. And why is it that children’s hospitals don’t have pubs???
Having said that, we are here doing this to give Ben the best chance of success during his upcoming surgery, so hover away I guess. We continue to monitor his neurological state regularly. Here are some of the things we look for to see signs of spinal cord strain. The most obvious neuro sign is the “follow my finger sign”. We do notice that Ben often has nystagmus in his eyes. Nystagmus is like an involuntary flutter of the eye as it is following something. Ben shows signs of this off and on, but in his case it is not consistent and significant. When we see this it means that the 6th cranial nerve in his spine is kind of saying “hey – what’s going on up there?” Ben often gets nystagmus shortly after we add his weight on in the morning, but sometimes at night too. If it did worsen, we would just reduce his weights slightly to the point where it would stop, but it hasn’t gotten to that point yet. The other things we look for in our neuro exams are basically just balance and symmetry. We like to see him smile evenly, squeeze hands evenly, shrug his shoulders evenly, and feel evenly on both sides of his body. We also watch to see that his pupils are reacting evenly to light. All of these things give us a strong indication of what strain Ben’s spinal cord is under, and right now they seem to be saying “I’m good”!
I think a lot of what we do here is like playing neurological Jenga. We continue to add on pieces (pounds) and look to make sure we don’t screw the whole thing up…oooops….it’s wobbly….oh….it’s going to fall…..no…..wait….wait….ohhhhh…..ok…we’re ok…..give me another half pound. (Please note: the doctors here do not agree with many of my similes/metaphors – when I mention these lively comparisons, they look at me as though I have just said “I want to marry a goat”. Having said that, I feel like my comparisons are BANG ON and super valid, so I am keeping them – they can write their own less vivid blog.) Anyways, after we have our Xrays on Wednesday, we will decide what our next Jenga move is. We might decide to continue adding weight…leave the weight where it is, or extend our traction time…we’ll see. At this point we are still booked for our major surgery on March 13th, but we are open to any changes if we feel like it’s best for Ben’s long term success.
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Here is a video of Ben hanging from his screws while watching the iPad…seriously!!! Watch his feet!
This is a video of Ben dragging around half his body weight.
These are some super cool tic-tac’s I bought today. Banana flavored minions …right….I KNOW!!!..if you can’t have red wine,eat minions! How cute are they!!!
9 thoughts on “I’m gonna need 250 cc’s of Cabernet…STAT!!!”
Seriously… Ben! You are going to give us all a heart attack! That is so crazy😝😝
Oh you have no idea how crazy this kid is!!! His friend Amber won’t even eat with us anymore (and she just had a halo). She quite the little mother hen. The nurses just laugh and say “there goes Ben!”
My head hurts just thinking about hanging by screws like that! :-0
Ben, you are one tough cookie!! It’s great to see you having fun in these videos.
Kids are so resilient! It’s just mind boggling!
Karen, if you’re ever looking for a new line of work, I’m pretty sure you can be a writer or a comedian. Your attitude is inspiring!
Oh stop teasing! You know you have my dream job!!! 🙂
Sent from my iPhone
Every time I read your latest post, I am filled with admiration and awe! First, Ben is so resilient and strong and crazy!!! So wonderful to hear about his friends there and his school and see him making the best of the situation. And Karen, you are amazing and a wonderfully funny writer and maybe also best mom ever! Seriously, you are an inspiration and you are an extremely talented writer and you could turn your blog into a book! Good luck on the 13th. I’ll be thinking of Ben and sending a prayer!
Thanks so much Pam! I so appreciate all your kindness and encouragement. I looking forward to tomorrow’s X-rays and seeing if Ben’s spine has straightened a little.