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.

Wait times suck.

I am really lucky at my work, I have been assured by my boss and the President that they will support me to take whatever time I may need to get through all of this, and that if there is one thing not to worry about it is work. But here's the thing - I totally do worry. At this point in time I am hopeful (or anxious) that the surgery will take place in February 2015. It is entirely possible my place of work will be gearing up for what could be a massive strike right around that time (and I happen to be the Director of HR responsible for managing our labour relations portfolio). Oh, and one of my team may also need to be off for totally legitimate reasons of her own - at a schedule that is also somewhat out of her control. And I mean we are planning and speaking of contingencies, but none of those options are as good as me being there. 

So I worry. And complain that I can't seem to get a date or even a closer estimate of a date. And to be fair, I haven't made one phone call about any of this - I leave that to Andrew who is way more reliable and self-contained that I am. But seriously! The Paediatric Canadian Access Targets for Surgery (P-CATS) List suggests that assuming her scoliosis was "stable" she should have had surgery within 6 months of diagnosis, but here we are 6 months later and we still don't have a date. And I don't think it is stable. But I am not a doctor.

Our next appointment with the surgeon was just rescheduled (by snail mail in a letter addressed to my daughter!) for 2 weeks later. And I know, it is only 2 weeks, and I chose to believe that it is for some legitimate reason, but still - who doesn't use a phone or at least email?

And I don't think I shared that when I asked the surgeon about getting this scheduled at our last appointment, his reply was that he is only permitted to do this particular surgery once per month - so that is quite limiting. Apparently it is a big and costly surgery, so even though there are people needing it, the pediatric hospital we are dealing with prefers the less costly, less time consuming ones. Oh - and we were referred in FREAKING MAY!!! for a second opinion appointment at the leading pediatric hospital in the country and have yet to have that appointment booked either. So yay! free health care, unless you really need it, then get in line and maybe we'll get to you in a few months.

I just want a date. I mean is there a reason we can't get booked for February with a one-month move possibility? even that would be better than this. But I will push it again on October 20.

And lastly - donate blood if you can. My little girl may need it, and if not mine, someone else's. I can't - the risk of me being a walking mad-cow incubator still exists, and it seems cannot be confirmed (or denied) officially without a biopsy of my dead brain - see, you travel the world when you are young, and these are the consequences.

And it started like this

I have been looking for more 'real' information about this whole scoliosis diagnosis and surgery and what - what happens, how will she feel - and I haven't found it - though maybe I am using Google incorrectly and that is why. So I decided we, as a family, could maybe share our thoughts as we move forward through this journey, and hopefully through a smooth and uneventful recovery - but then if there is someone else one day asking these same questions, they can stumble upon this and have at least one family's perspective on things.

(oh, and we are Canadian, so this surgery is covered by our universal healthcare system - but I will still complain a little about wait times)

So the story to now: I (Mom here) am not a big taker of the kids to the Doctor - we go for shots as needed, and of course as babies I had them in for all their check-ups, but now that they are older, Doctor's visits (outside of the immunization schedule) are for specific complaints that can't be otherwise treated. So back in March 2014 I noticed that my little Dude had a mole on his neck that he kept scratching at - so just to be safe, I took him in to have it checked. On being brought back to the exam room, the nurse casually asked when I was last in with the Dude? I replied that it had probably been a year and a half, maybe two years? Her reply was 'almost three.' So when the Doctor came in , I asked if if I should be scheduling something for Avery as I figured it had been likely the same amount of time, to which her reply was something like 'no, we don't really need her to come in annually if there is nothing wrong, but the one thing I would look for in an otherwise healthy 11 year old would be if her spine was straight, but you can do that easily enough at home - just have her stand up and bend over to touch her toes and look - you'll see :) ' (yes, I believe there was a smiley in that sentence)

So half jokingly I did just that. And this is what I saw:

So I called the Doctor's office and made an appointment. We saw the Doctor the next week (and on arrival, the Doctor said she thought I may have been joking to have scheduled this appointment - in a nice way). She took a quick look and immediately referred us to Avery's pediatrician from when she was maybe 1.5 years old. That appointment happened a few days later - at the end of March. 

I hated the pediatrician appointment - she asked me 4 times if I was sure I hadn't noticed this before now - which offended me; though it was suggested to me afterwards that what she was trying to get at was how quickly did this develop - had I noticed it last year, but not thought much of it, or did it just show up with no warning? I felt like The.Worst.Mom.Ever. She sent us immediately across to the hospital for scoliosis screen x-rays and worked up a referral to a pediatric orthopedic surgeon in Hamilton. Those x-rays suggested a 42 degree curve.

The specialist appointment was scheduled for early May 2014 - and last minute I had a work function to attend, so I sent Avery with her Dad (who is an awesome dad and totally capable to do this appointment - in fact probably more so that me.) I mean we figured she would maybe get a brace, maybe physio, maybe chiropractic. We were not at all expecting to come away from that appointment with a surgery is the only option diagnosis. The curve, when corrected with a 1 cm piece of wood was presenting as an "S" with 47 degree curve at the top and 50ish at the bottom (I am sure if I got that wrong, Andrew will fix it later) but the point being, once the curve is over 45 (at most - 40 by many people's opinion) bracing would only make it worse, so surgery becomes the only option. I thought I felt like The.Worst.Mom.Ever. at the pediatricians; not being there for this appointment made me feel like The.Absolute.Worst.Mom.Ever.- and really by the time they were done, it was nearly noon - but I basically missed any worthwhile content at the session I was at because I kept getting hit with waves of awful.

So we absorb surgery. We talk about what this means - we (and by we, I mean Andrew) were told that once the surgery is scheduled, we should plan on having Avery bank her blood so that she can be give her own blood if any is needed during surgery. We were told that the surgery would take approximately 10 hours, and then Avery would need to be in the ICU for a day. Following that, she would be in the hospital for 1 week. Then home, but off school for 3 more weeks, then gradually returning to school, with the plan that she be back full-time within 4 months of her surgery. FOUR MONTHS?!?! oh, and no physical activity for about a year.

The follow-up appointment with the surgeon was scheduled for  July 2014. This time I went. I will not be missing another appointment - at least not for something work related. I was under the misguided belief that this appointment would schedule surgery. Avery had updated x-rays taken and the surgeon evaluated them and it seemed that both curves had gotten worse. He does say that his margin of error is 5%, so possibly not, but I was pretty sure that curve looked worse, but what do I know, I am HR manager. (I swear he said 51 and 57, but Andrew swears I am mistaken). And all we left with was a follow-up appointment in 3 months and a prescription for physiotherapy and an inversion table (or as the Dude calls it a diversion table - which I partly think is accurate as that prescription came when I tried to push about timing for surgery).

So here we are in (almost) October 2014. Our follow-up appointment was just pushed back to late October from early October and we don't yet have a surgery date.  This was Avery last Friday:

So maybe it is just the way I took the photo, but I feel like there is a visible difference, and not for the better.

Now, I get that there are kids with way worse cases than this. I am super thankful that to date, she hasn't experienced much pain or discomfort, and that this diagnosis hasn't limited her ability to do anything - I mean she just finished playing beach volleyball all summer and field hockey at school. She is doing her physio exercises fairly consistently, and practices yoga with her dad once a week.

I was told to find her an osteopath by my massage therapist. Another RMT friend suggested I need to find a chiropractor who does something with the 'functional chain' (which I think is a kinesiology thing). I am pretty resigned to surgery, I mean I am all for holistic stuff, and will try lots of stuff to help, but I don't think I am going to find some magic bullet that will bring her up to closer to straight. Oh and that - so our surgeon sent us to this website for information : http://spinal-deformity-surgeon.com/  and I was a little surprised that the correction was to about 20 degree curve - even with the surgery, we aren't likely to get to straight. 

Ok. That is enough for the first post. I have invited both Avery and Andrew to post to this blog as well - I mean you never know what we may learn from one another this way.