Showing posts with label Scoliosis. Show all posts
Showing posts with label Scoliosis. Show all posts

Welcome!

After our daughter was diagnosed with a severe case of idiopathic scoliosis we went searching for information on what to expect. We didn't find any. Well, not much at least. There were lots of medical mumbo-jumbo and a few personal experiences, but nothing that chronicled the journey and what parents and patients could actually expect. While Dad was suggesting that the patient, Princess Pants, start a journal Mom was creating this blog space. The goal: provide information based on real-world experiences so that the next person to come looking for the information we so desperately sought would have it at their fingertips.

The Journey Starts Here

  1. The Beginning
  2. Waiting
  3. More Waiting
  4. The Clock Starts
  5. The Final Countdown
  6. A Different Kind of Waiting
  7. Everything is Okay, But...
  8. Healing
  9. Passing the Tests
  10. Home Sweet Home
  11. Houston, We Have Progress
  12. Houston, We Have a Teenager
  13. Back to School
  14. One Year

Book available in paperback and for Kindle at Amazon:
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Also available as an ebook at:
Kobo | Barnes & Noble | Apple | Google | !ndigo

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A Picture and a Song

Today we travelled back down to McMaster Children's Hospital to visit Dr. Missiuna at his fracture clinic for our first post-discharge appointment. As with most visits to the hospital we spend more time finding parking and waiting than we do anything else. It's not normally a big deal but Pants was experiencing the worst pain she says she's felt since she came out of surgery. I suspect her latest dose of pain meds hadn't kicked in yet and the 45 minute journey in the car couldn't have been comfortable. At any rate, they got us into a room so she could lie down and she started to feel better.

Doctor Missiuna came in eventually and took the bandage off her back that was covering up her stitches. He said the wound looked great and that she should take a shower! He also said that she'd start to feel a lot better after about 3 weeks post surgery and that part time school could occur then, with a gradual approach to returning to full time school as her pain and fatigue levels allow. 

We asked about physio and he said that would start at about 3 months post op. We asked about her body movement and how long it would be before she started to move around more naturally and get used to her new body. He said that at 6-12 weeks they start to feel more comfortable, and that she's still ahead of the curve. 

Then, he showed us what we've been eager to see since she got out of surgery. The latest set of x-rays! I asked for a CD of the x-rays from the hospital and they (reluctantly) agreed so I've taken the liberty of including a side-by-side before-and-after view for your enjoyment. Again, I couldn't get the scaling quite right but you get the idea. All I can say is holy smokes, that's a lot of hardware. 



The two images on the left pretty much say it all. She's going to have to get used to having so much of her spine rigid, but look at it! That's one good looking posture. No more deformation. No more risk of damage to her lungs or other internal organs. 

On the way home we stopped to get some Subway and left Pants in the car. As I left she said, "Don't take too long. I'm probably worth a lot of money with all this metal in me." I love that she's still got her sense of humour. 


Before this all went down I was talking to my friend and former band mate Jim. I asked him if he thought he could write a song for Pants. She absolutely loves music, and Jim's such a compassionate person (and a talented musician to boot), I figured this was a great idea. Well, today Jim and his band Woot Suit Riot released a song that I can only describe as amazing. Watching the video brought a tear to my eye and as soon as Pants wakes up from her nap I'm going to show it to her. She's heard a rough cut that was missing the harmonies but she was high as a kite at the time so it'll be nice for her to listen to it and see the video with her head less cloudy. 

Here it is, in all it's awesomeness. Thank you, Jim and Woot Suit Riot, for doing this. It's an absolutely wonderful gesture and an absolutely wonderful song for an absolutely wonderful girl who we are absolutely proud to call our daughter.

"Bend" - Woot Suit Riot


~ Dad

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Progress!

News! Results! And no, I wouldn't rip anyone's head off :p

 So first thing, my dad was a huge help spending the night so he could take the dude to school, then he hung out here 'just in case the school called while we were away' which ended up being until nearly noon.

 So on to McMaster. We arrived minutes before 8:00 (after getting lost. Perhaps we wil use the gps next time) to wait to get Pants' X-ray requisition - the receptionist let us in around 8:10 (I was totally pacing) and I budded in front of a brand new family there with their 5 day old baby. Jerk. I apologized - I was hoping to just grab the req and run over to X-ray, but we got fully checked in. Next time I will be more patient. On to X-ray, which was pretty uneventful and quick, then back to the clinic and we hardly sat down before we got called back ( I think I prefer these 8:30 am appointments for that, though the inconvenience with Dude needs to be balanced by my joy of not having to hang out in a hospital waiting room). We had a student doctor and a temperamental computer, so that stay was short, before we got sent back over for more X-rays in a bent over pose. We were back in the clinic and in front of the X-rays moments after returning to the clinic. There appeared to be progression of the curve, but the doctor didn't want to tell me  us what the number was (but I saw it written down as ~60) which is roughly 18 degrees more than the first X-ray - without the 1 cm wood block correction since March.

 This appointment I felt like I was getting more information - things like: surgery will be in January or February. She needs to have an MRI. Ok, maybe my head was going to pop off without more information. The doctor even suggested we visit his medical office, you know, just to show our faces - so we did.  There we got a checklist with 6 things that need to happen before surgery. We told them that we would appreciate grouped appointments of possible so as to limit our travel. We were even offered paperwork for Ronald McDonald house, but I think we'll just do the drive and save that space for people who really need it.

 And if that wasn't enough, by the time I was leaving the office tonight, we already had her MRI confirmed for this Sunday at 9:15 am - I mean wow! She doesn't even play professional sports.

 So there. I feel like I know a little better what is coming and when it is coming. Avery seems ok, if not pleased that she will make it through Christmas before surgery - and with this schedule, should be mostly healed up by the time summer vacation rolls around.
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We're in the 21st Century, Right?

It's not like we're just into the 21st century or anything. We're almost a full fourteen years into it and in trying to get Avery a second opinion with one of the most technologically advanced paediatric hospitals in the country what do we receive? A letter. Mailed to us with a stamp on it and everything.
Image courtesy Canada Post.

In spite of the fact that I had left specific instructions with an actual human that I would like a phone call so that we can avoid any back and forth about times that work we get this letter. As Jodi mentioned, of course it's for one of the few times when she simply cannot make it. There wasn't many, but this was one of them.

So I call them back at the number provided in my mimeographed form letter and get voice mail. I left a message. The next day I call back again and have to leave another message. That afternoon I get a call back! It's someone asking about why I called and how they could help me. Strange, I was clear in my message I wanted to see if we could reschedule the appointment. "Oh! If you want to change your appointment you have to talk to [this other lady]! Let me transfer you." Voice mail. *sigh*

Image courtesy http://www.rjrprops.com/

I leave a message. No response for the remainder of the day but lo and behold they called me back this morning! Turns out they can change the appointment but the doctor is only in once a week for this sort of thing and they're booked right up for a while. December 2nd is the earliest next appointment. Done. Good. Now let's move on, shall we?

Meeting with Avery's surgeon on Monday. Going to go over some things with her on the website he recommended and see if she has any questions. I know I have a big list of them piling up. I'm sure you'll see a few updates from us Monday afternoon / evening.

~ Dad
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