Long time – no hear! August 4, 2022

Hello, hello! I know…I have been shockingly absent over the last few years. There are a few reasons for that. The first is…our life has been pleasantly calm and quiet for the past few years as Covid has eaten away at our mandatory appointments and little to nothing has been happening for us medically, which, to be quite honest, has been great for us! We have all managed to get Covid at one time or another but have fared quite well. I’m not going to brag or anything, but I was the last one to get it, which basically means if there was a zombie apocalypse it is most likely that I would be the last one to survive. I know it’s a bit of a leap, but I’m going there.

The other reason I have not been able to update is I am working on my doctorate, so any spare time I have is filled with the kind of mind-numbing endurance activities to leave one yearning for the finer things in life like cleaning toilets and having mammograms. I have read so many dissertations in the past two years that I dream of “statistically significant” hypotheses and a “lack of overall generalizable research.” So while Benjamin continues to thrive both physically and academically, I have become a withered shell of the woman I once was.

Ben: Mom – Can so-and-so come over this weekend?

Me: (five minutes later)…what?

Ben: Can so-and-so come over this weekend?

Me: Who’s so-and-so?

Ben: My friend since pre-k?

Me: Oh….do I like them?

Ben: yes…can he?

Me: I have to go write something down before I forget…

Ben: sigh….I’ll go ask dad

Yup, that is the kind of stellar parenting skills that I am displaying on a regular basis these days. As they say in Pre-K – you get what you get and you don’t get upset!

Anyways, on August 2nd, Ben had another surgery to (wait for it….) put more screws in his body! Yeah…I know…it’s getting old. Frankly, it’s been a few years, and who doesn’t need a few screws in their head every few years? These particular screws are just for his hearing aids to sit on and will allow them to conduct sound to his cochlea (no – they are not cochlear implants…they are BAHA – bone anchored hearing aid implants. They will allow sound to skip Ben’s narrow and somewhat screwed-up middle ear and hit his cochlea with the full impact of soundness. Over the past five years, Ben has worn a head band to keep his BAHA close to his skull, but this more permanent solution will be better; although it will be an adjustment. Technically, this is the first time we have screwed up his head….or is it….muah, muah, muah!!!

This surgery was the first part of a two part surgery…and it. was local, which was a nice treat…and a day surgery…which happens like NEVER for us! It’s nice to not be flown 3000 km for a surgery. I think his second part is in about three months time. The plan was to anchor the screws to his skull on both sides. Then they were going to scrape his scalp on both sides of the head to think the skin to make sure hair doesn’t grow there. We were also told (during our consults for the last two years) that Ben was going to have his ear pinned back and tucked somehow. We were given three options during our pre-meetings. The first was ….do nothing. The second was the pin and tuck in the hope that it is easier to hold up his glasses should he need them in the future (which we think we will). The third option was a major ear reconstruction using the ribs in his chest to harvest cartilage to create a new ear. We choses the second option…a quick nip and tuck.

Day of surgery – (surgeon comes in). “Hmmmmm…was it my idea to do a nip and tuck?” Me: “ummmmmm…yes” (seriously….I don’t think up this stuff). Surgeon: “hmmmm”….(frowning)…”.I don’t think that will work – it will only look like half an ear and it won’t hold up his glasses”. Me: (silently….wtf? This wasn’t my idea)….out loud: “What are you thinking”. Surgeon: “If we want to hold up his glasses, we will need to do a full reconstruction, and if we do that we need his chest to have a girth of 60 cm….I can still do the nip and tuck, but if I do the full reconstruction I would rather do it on a pristine ear”. Anyways, to make a long story short, I called home and Jesse and I decided to hold off on any ear reconstruction for now. So….our favourite floppy and “pristine” ear is still around. To say I was annoyed to be having this discussion on surgery day is an understatement.

Anyways, Ben is doing well post-op. He had a significant amount of “head pain” yesterday; although we kept up on all his meds. He had an awful sleep last night because he could feel the bolts inside his head. If you think about it, there is no fat on your skull, so having bolts under the skin must be aggravating to say the least. However, he continues to be the most amazing patient and is so thankful for all who help him. Today he is walking around with his shoulders shrugged up towards his ears. He says it feels better when he does that. I have offered ice and heat, but he says it doesn’t make a difference. I suspect the skin area feels like a scraped knee…sore and tight. I wonder if they put his bolts too close to the back of his head, which will provide him with feedback on his hearing aids for the rest of his life. I feel queasy worrying about stuff like that. It’s weird….if something happens to shake one’s confidence with a doctor, it creates a sea or doubt and worry. I guess we will know in three(ish) months. We had an amazing nurse post-op who was a treat to deal with, so we are grateful for that.

Nothing says surgery is over like a blue popsicle!

Ben is looking forward to getting new state-of-the-art hearing aids as a part of this deal. As a matter of fact, I am just waiting for his audiologist to call me back, so we can order them. Ben is pretty excited. The new ones have Bluetooth technology, and all kinds of bells and whistles that we think will support easier hearing. All in all, I think we will have more positives than negatives from this surgery if the placement is correct. It’s also his birthday this week, so we bought him a little Galaxy pad thing-a-ma-jiggy and gave it to him the day of his surgery. It has been nice to have and a great distraction!

We also have a follow-up appointment with Shriners towards the end of the month, which makes me feel better. It has been about two years since we have been seen in person, and I will feel a whole lot better to have some X-rays and see what is going on. We have too much hardware in there to trust that all is well (although I think it is). Ben has started resting his hands behind his head a lot (imagine a sit-up without sitting up). I ask him if something hurts, and he says no, but I am still suspicious!

Other than that, we have junior high to look forward to next year! I know! Can you believe it! I am going to try to not be a helicopter, crazy mom at his new school and let him work things out on his own to build up his independence and self-confidence. The school has made that so much easier by not calling me at all to talk to me at all about his transition to the new school. That’s fine….I’m sure Ben in all his awesomeness will communicate any information they need, but I seriously hate trusting strangers!

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7 thoughts on “Long time – no hear! August 4, 2022

  1. Thank you so much Karen for the update on Ben’s condition. It explains what he is going through , he is amazing and so are you. Thinking of you and whishing Ben a smooth recovery. Love

  2. Thank you for the update. Ben is such a trooper. I hope his hearing improves significantly – he certainly deserves it. You are such a good mom. You’re almost done with school – won’t that be a treat for everyone!!

  3. You are an amazing story teller. Thanks for sharing Ben and your family’s journey. Ben sounds like such a resilient, incredible kiddo! Kudos to you for making sure he has the independence and skills he needs to navigate. He will be fine in Jr High!

  4. Did you say that Ben is going into junior high? Oh my. Glad to hear he is doing so well. Such a sweet kid.

  5. Friend!!❤️ Well this is all awesome. Cannot believe he will be a jr high kid!! Wow. You continue to rock it all out. I am sure you will be glad when you are done school and have opened up your own. 😉

  6. Woah, that’s a lot! So happy to hear that surgery went well after all that! And this junior high thing feels like it happened all too fast! Love that he’s such an amazing kid who seems to take most things all in stride. Love and hugs to all xoxo

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