Monday, December 29, 2014

The Countdown Is On (And Dad Chimes In)

Well it's been a pretty hectic last couple weeks. I wanted Jodi (who was growing frustrated with each passing minute with no date) and Avery (who is understandably terrified and going through this on a level that I can't even begin to understand) to get their thoughts out while I took it all in and processed it.

I've been meaning to post and then kept putting it off not thinking I had anything worthwhile to say. It's a lot of worrying. Nothing I can do but reassure Avery that she's in great hands and that she's a strong girl who will handle this like a champ. Still, it's on my mind pretty much all the time. I distract myself with work and anything I can, but the second I let my guard down it's on my mind - and it's crushing me.

The biggest part is I can't do anything. It's hard to describe, this feeling of being the father. I didn't get to carry her in my womb for 8 1/4 months. I don't know what it's like to have that connection that mothers have with their children. The list of things I am clueless about is extensive.

I can be there for her, emotionally and to hold her hand or give her a hug, and that's what I plan on doing as much as I possibly can. I can also donate blood, though for much of today it looked like that wasn't going to happen. I got a voice mail today from Canadian Blood Services saying that due to a scheduling problem they wouldn't be able to get me in to provide a donation.

I'll be completely honest. I was really upset. This was to be the one thing that I could actually do for Avery and I was really looking forward to doing it. Knowing that if something happened during surgery and they needed blood that mine would be the first drops they would go to, well, it was an indescribable feeling, and with one voice mail that rug was pulled out from under me. Not quite devastating, but pretty darn close. The message said I should call them back, so I did, but I got voice mail. A few minutes later I got a call back from a coordinator saying that her manager would be calling me back to explain.

Well, that was the end of that until about 7:00 tonight. While doing the dishes I got a call from Canadian Blood Services. The manager informed me that they would be able to fit my donation into the schedule. January 8th with details to follow. What makes me feel really good about this is that the gentleman who called said that the problem with scheduling came to his attention at 1:00 and he's been working on re-jigging the schedules because, "We really wanted to make sure you were able to make this donation for your daughter." Faith in the system restored.

So, it seems like getting to a surgery date is the biggest hurdle because once you have a date boy howdy do things ever move like clockwork. Surgical consult within 3 weeks of getting the date. Blood donation two days after that. Pre-op booked for a week before the surgery and several weeks in advance... It's very encouraging, if not a bit overwhelming.

So there you have it. A ridiculously busy January on the horizon.

~ Dad

Tuesday, December 23, 2014

Pre-op confirmed. I guess we are doing this.

Pre-op is scheduled for January 13. Great Wolf Lodge is booked for January 15/16 and we are bringing 2 of Avery's friends (I am sure they are upset about the day off school to go to a waterpark). So it seems like everything is rolling out as it should, and once the holidays are over, the surgery will come quick (maybe faster than we are emotionally ready for, but there is nothing to be done about that).

We will workout the details with my parents for the week Avery will be in the hospital so that the Dude is well cared for and not left standing on the curb at school waiting for me to show up.

4 weeks today.

Wednesday, December 17, 2014

Aaaaahhhhhhhhhhhhh!😖 I just got back from yoga and found out that the surgery will happen on the twentieth of January. Six days earlier than we thought. I don't realy know what Im feeling, because I don't want to scream or cry. I cried a little at the start, but now I'm not sure. I guess I just want to process it, get it through my head that a bunch of people I don't know are gonna CUT A HOLE IN MY BACK WHILE I'M ASLEEP. Ok well now i want to scream, but at least we have a date. A definite date. No backing out now. I'm gonna get surgery. "Yah!".😱

            Princess pants👸

                       

We have a date!

After a torturous week of back and forth with the surgeons office and the hospital and Andrew (probably better for everyone this has been with Andrew and not me) we have a confirmed date for the surgery. January 20th. Like a month from now. I am very happy that the first big wait is done and we can now start some concrete planning, but now we have the big wait for the day to actually arrive. Between now and then we have an appointment with the surgeon to discuss the MRI and some surgery details, a meeting with the hospital appointed social worker, Andrew will donate 3 units of blood for use if necessary for Avery in the surgery, a pre-op day, and I promised an overnight to Great Wolf Lodge. I suppose I should also plan on a trip to the school to ensure things  are in place for her school work while she is recovering.  The next 33 days are going to be busy. As are the next 4 months while she is recovering.

All the positive thoughts in the world are welcome, in whatever format works for you that this all goes as planned and Avery is walking around the house before February arrives.

Thursday, December 11, 2014

A date! (Maybe)

We might have a date! January 26, 2015 if the hospital confirms. 7 weeks. This could all be happening in 7 weeks. And Andrew can direct donate as his blood and antibodies are a match - I can't because of the mad cow disease thing. So once we know if we are confirmed - hopefully by Monday, then things just start happening. Including a trip to great wolf lodge for just before, because why not.

7 weeks!

Tuesday, December 2, 2014

Opinion: Seconded. Motion: Carried.

Driving to Toronto sucks.

Today was the day that months of months of waiting finally paid off as we travelled to our much anticipated second opinion appointment with a surgeon at the Hospital for Sick Children ("Sick Kids") in Toronto.

As it turned out months and months of waiting culminated with hours and hours of waiting. Our appointment was for 10:00 and we were told to be there at 9:30. We got Jodi's dad to come over last night so we could leave early enough in the morning and he could take The Dude to school for 8:30. We left a smidge after 7:30 and got to Sick Kids at 9:38.

Did I mention that driving to Toronto sucks?

We arrive at the orthopaedic clinic at 9:40 and wait in line until 10:00. After a good 15 minutes to get registered and get all of the images copied over from CD we go off to x-ray, where we wait some more. From x-ray we go back to orthopaedics and we wait there, and wait, and wait, and wait. Sometime around 11:50 we get to go to a room! We wait there for another ten minutes or so before we are greeted by a very pleasant Nurse Practitioner named Kim (I believe it was Kim. Jodi noticed her name but I only got her title. All you psychology/sociology nerds can judge me later, I'm telling a story here).

Nurse Practitioner Kim was wonderful with Avery and put her through a barrage of tests, the whole time telling us that she had spoken with the surgeon and would be bringing him in shortly. At around 12:25 or so Kim left to get the surgeon and I ran out to put more money in the S.S. Minnow parking meter thingy (it only lets you pay in three hour tours).

The surgeon returned a few minutes after I got back and gave us the news that we knew was coming: the only way to fix Avery's curve is through surgery. This was not unexpected but I know that I found it reassuring nonetheless.

We did find out a few other things while we were there as well:
  • Her spine is probably only going to grow another couple centimetres so this is a good time to have the surgery (she's going to be all legs, just like her mother)
  • Spine angles in her range typically get 70-80% corrected (as opposed to only 50% correction if her angles were worse)
  • The doctor feels she has more flexibility than she was showing during her bend tests today (anxiety and having been sitting in a car and chairs all morning factors)
  • She's not likely going to need a brace after her surgery (they only brace afterwards in a select few cases) 
  • Her spine is also rotated (in addition to curved). Rotation of the spine for a curve this large is expected and they'd be worried if it didn't
And that was that. Since this was a second opinion appointment there wasn't any further paperwork required and she was discharged and off we went. To give you some of an idea of what Avery's spine looks like now I took this low-res screen shot off my laptop from her MRI on October 26:

The only thing fixing this curve is surgery. 

As you can see, there's no doubt about it. Because of the "S" curve in her spine she bends to one side better than she does the other. As Jodi eluded to in a previous post Avery and I were at yoga two weeks ago and Avery tried to do some wall work (yoga against a wall - it's much harder and gives you an indication of your true range of motion). Well, she was unable to do a posture that she previously had no trouble with. It was the first physical manifestation of her condition that she had experienced and it was in front of a whole bunch of people she didn't know. This brought on a wave of emotions and she broke down in the middle of class and I had to bring her home. As a parent it was incredibly hard for me to watch so I can only imagine how hard it was for her to experience. Anyway, she went back next week with my mother and they didn't do wall work and they both had a great time.

Up next: On Thursday Avery does her cardio-pulmonary baseline tests and afterwards she gets her blood and antibodies typed and I get my blood tested for compatibility.

~ Dad

P.S. Driving into Toronto sucks. 
 

Wednesday, November 26, 2014

Late November progress report

Getting closer to having a date for surgery. The doctor's office advised they should have the January schedule by Friday- so we are either on it, or can be fairly confident it will be in February. But stuff is happening - Avery has her lung capacity test (required for surgery) on Monday morning and we go to Sick Kids on Tuesday.

I was hoping Avery would write about her upset at yoga last week, but I guess she is 12 -maybe her father can fill you in as he was there with her - what I got from the story was that Avery noticed her curve has gotten worse because they were doing some wall work, and previously she could do this stuff, but this time, she just couldn't. Since I like the silver lining for such things, I figure that a moment of personal recognition of the limitation at least makes all this talk of surgery not seem cosmetic or unnecessary in the eyes of the owner. 

According to the Ontario wait time website, the average wait for this surgery at McMaster is 243 days. At sick kids it was over 400. Perspective helps I guess.

Wednesday, November 5, 2014

growing up sucks(sometimes)

Growing up sucks. I wish we didn't have to grow up, because when you grow up everybody is always expecting you to try ten times as hard and never mess up. As you get older you have more responsibilities and alot more people look up to you. A lot of the time I wish That I could have stayed eight forever, so that I wouldn't constantly have to be making sure I didn't mess anything up, because when your older it seems that someone is always there waiting to criticize you every time you do even the smallest thing wrong. Teachers start telling you to forget stuff that's Been  nailed into your head since kindergarten, so that you can do it a way that's harder, you have to work out some things that other people have helped you with before on your own , and sometimes    I just want to sit down and cry.  Added to that I have to worry about getting surgery. That's going to take a huge chunk out of my life ,  i  mean, I'm not going to be able to do gym for a year, and I'm going to be off school for a month or more  so I'm going to  miss a lot if things, and my internal organs will be all messed up because they will have more room to go where they're supposed to go. All in all I don't really want to grow up but if I don't grow up I'll never get to drive a car, or get a job, or go to high school or university , or become a teacher like I want to. If you don't grow up, you miss out on a lot of new things, but if you do, your not supposed to do something's anymore, but you get to do new ones.

Princess pants👸

Sunday, October 26, 2014

It's In You To Give

I want to talk about what happened last week and the profound impact it's had on me, and how I feel about charity and giving.

A few months ago a Facebook friend of ours had to have surgery. Brain surgery. Real dangerous stuff. He's the real estate agent who drove us around for two days back in 2009 and showed us almost 30 homes and ultimately helped us buy the house we have lived in for the past 5 years. He even did the final walk through so my wife and I wouldn't have to fly in from Ottawa to do it. We've stayed in touch on Facebook since then and followed the changes in his life, as he and his wife had their first child and then proudly announced earlier this year that another one was on the way.

During his surgery he almost died. He started to bleed and wouldn't stop. There was something like a 1% chance of this happening and it did. It took blood donations from 60 people to save his life. They pumped 12 litres of blood into him to keep him alive. 12 litres. His body only holds 4. He came out of surgery without a single drop of the blood he went in with - 3 times over.

Healing and grateful to be alive he decided to give a little back and hold a blood drive down at the local Canadian Blood Services location in Waterloo and he asked all his friends on Facebook if they would consider donating.

I had low blood iron for the longest time and then was on some pretty fun medications after that and had never donated before. Being med free and with a healthy hemoglobin level right now the only thing stopping me was a healthy fear of needles and queasiness at the sight of blood, which seemed like really lame-ass excuses. So I booked my first ever appointment to donate blood for Tuesday of last week.

Then, in what can only be described as a karmic twist of the Universe, the Monday before my blood donation appointment Jodi and I found out that Avery does not weigh enough to bank her own blood before her surgery. You see, she has severe scoliosis and needs to have spinal surgery in the new year to have metal rods cemented and screwed into her spine to keep it straight. It's a 10 hour surgery and if not everything goes as planned she'll need blood. Better it's her own than someone else's too. Only now that was not possible.

Jodi cannot donate because of some funky rule that prohibits donations from people who lived in France for more than 3 months during certain years. Seeing as she lived there for a year during one of those years she's ineligible (something about mad cow disease and not being able to test for it until after you're dead). I will be tested for compatibility (blood type, antibodies, etc...) and if I'm a match I will provide a directed donation to have on hand for Avery's surgery. I'll only be able to donate a couple litres though. A worst case scenario would see her needing more than what I can offer.

That means there'll be blood on hand from the blood bank. I really hope none of it will be needed, but it's awfully reassuring that it's there if it is in fact needed.

So on Tuesday I went in and donated blood for the first time. It was almost completely painless, everyone was very supportive, and I got to have juice and cookies afterwards. My friend was even there talking with all the people donating and thanking them. If I'm being completely honest, I felt really good about it. The best way I can describe it was that I felt like I was making an immediate and profound impact on somebody's life. I went home afterwards proudly sporting my "First Time Donor" pin and feeling great (though getting out of bed the next morning was a challenge. I was really tired!)

I've been telling people this story ever since and am encouraging everyone to go find out if they are able to give blood, and if they are to please donate. It makes a difference. It saved my friend's life and could very well save Avery's.



~ Dad

MRI done

Avery had her MRI (I have said 'we had an MRI' a few times, but really, she was in alone) today.  We were out the door by 8:15 for our 9:15 scheduled appointment in Hamilton. While in the Tim Hortons drive thru on our way there, I suddenly became concerned that maybe we needed to be there half an hour early for paperwork, but luckily my GPS had up set to arrive at 9:00, so I figured that split the difference.

We arrived around 9 and parked in the blue section, right beside the elevator - such luck! Then we went to get the elevator to go up one level... and waited. Seriously, we waited maybe 10 minutes. But there are no stairs in the blue level and never having been to blue, I was not sure on a Sunday at 9 am I could get from yellow to blue... so we waited. Finally in the elevator and up one floor to 1 where we needed to buzzed in to the MRI section. On arrival, Tammy the MRI receptionist informed us that they had an emergency patient and were running fairly behind schedule, like at least 2 hours, and there was word that another emergency patient was coming down, so maybe 3 hours. We decided to wander the hospital, so now I know that McMaster is a box and you can in fact get all the way round, even on Sunday morning at 9 am. (and no paperwork needed. It seems the computers actually transmit information here)

After a half hour wander, we came back to see where things were at and were told we still had a couple of hours, but for certain 1 hour as both machines were in use, so we went to have breakfast at the Maple Leaf/Tally Ho Pancake house - the place where Andrew and I had breakfast the day we decided to date - 19 years ago, almost exactly (October 20, 1994). I paid for our meal when I ordered in case we got a call to come back, so we just relaxed a bit - Avery was happy to eat peanut butter on her toast, a luxury she cannot have at home with her anaphylactic brother around. This pancake house is right beside Ronald McDonald House, and I am pretty sure the family that sat beside us was staying there. We headed back to the hospital, got the same parking spot! and a much quicker elevator ride back to the MRI area, Avery was given a lovely cotton hospital gown and before she could sit down, she was called back to  her scan.

I made Avery wear yoga pants and a t-shirt and change her bra so she had no hooks because I recalled reading that she may have been able to wear her own clothes. Turns out I was mis-informed because recent event have noted that many yoga pants contain silver threads - and they are not magnetic, but they are conductive and can apparently burn you. So no yoga pants. Cotton panties and a hospital gown to be safe.  She also got to watch a movie while in there - how cool is that?

So 45 minutes, maybe an hour passed and out came a very flushed and very loopy Avery. She said she fell over and hit her head in the change room trying to put her sock on. After about 5 minutes I got up to check on her as she didn't have that much clothing to put back on. She was loopy. I had an MRI a couple of years ago, and I too was loopy, so at least I got it, but she was not pleased with the loopy feeling.

We left the hospital and went to a mall (her choice - she said she didn't want to go home yet) so I took her to Limeridge and we did a quick tour of the mall. I mentioned she was loopy? We went in to Gymboree (I really wanted the tie shirt for the Dude, but alas, none in his size) but while I was looking, she looked at the Eric Carle section, and they had the book Brown Bear, Brown Bear, What Do You See? and she lost it! She came over ranting about how it makes no sense! No sense at all! Then brought me over to explain - you see the first page reads "Brown Bear, Brown Bear what do you see? I see a red bird looking at me." the next page reads "Red Bird, Red Bird, what do you see" and here is where she lost it - the Red Bird sees a yellow duck! But the Brown Bear said the Red Bird was looking at him! So how can the Red Bird see something other than a Brown Bear?!? I really wish I had of recorded it. (but maybe that makes me a less than nice mother). This really bothered her, I mean even after we left the store, she continued to rant about it.

So really - the MRI was uneventful, as an MRI should be. I stopped by x-ray to see if I could pick up her x-rays for the Sick Kids appointment, but they were not there. So I asked to have the MRI put on a disk and we can take it too. And on the up side, the x-ray section was open, so theoretically, I can go pick the disks up on a Sunday morning between now and December 2.

Tuesday, October 21, 2014

After the appointment

So its after the checkup and we found out the date. Well more information than we had. We found out that the surgery should happen around January/Febuary so I will be able to have a normal Christmas. Yaaaay!😄 I can't wait till Halloween though, Im going trick or treating with my friend!oops off track. So anyways the doctor said that hopefully I'll be able to have my surgery in January/Febuary, and that I have to have an MRI on Sunday. For the MRI I have to not move a muscle for 40 minutes, and they figured that that would be hard for me so their going to give me special goggles so that I can watch a movie. Yaah! But seriously, I'm not even going to be allowed to itch my nose! I bet that would be hard even for the most patient person! So more descriptive date, MRI on Sunday, check up in January, and that's all. You've been caught up. I'll talk more later. Bye😀.

                Princess Pants👸

Monday, October 20, 2014

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.

Sunday, October 19, 2014

the day before

I'm  scared. I go for my third checkup tomorrow, where we'll hopefully find out when my surgery is, but I don't really want to because knowing when it's going to happen and knowing that it's going to happen are two very different things. But I'm afraid that if Dr.Missuna doesn't tell us, my mom is going to rip off his head, because it's driving her crazy not knowing. Me? I'd be perfectly fine if no one ever told me when it was going to happen until I had to start donating blood, because if I haven't already said so I DON'T WANT TO KNOW!!!! Anyways, as I said at the begining I don't want to know because knowing when just makes it all the more real. Talk to you more after the checkup.

                                               Princess pants👸

Friday, October 17, 2014

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

Wednesday, October 15, 2014

2nd opinion

Yay! After 5 months of waiting, there was a letter addressed to the "parent or guardian of" from Sick Kids for the 2nd opinion appointment! Finally! But as this saga would have it, the appointment is scheduled for a day that I cannot be available. Andrew is trying to see if there is another November option that I could be there for, but I am doubtful - so here I am missing another appointment for work, but this conflict is not at my control and I am the only person who can tend to it. So I may miss it. My present question is, if this surgeon has PrincessPants as a patient, would they be planning for surgery now, or wait until she is in her teens?  I am not even sure which answer I would prefer, but we will have seen our surgeon by then as well. So I may ask the same thing if I don't feel I am getting a straight answer. So there, good and bad, but progress none the less.

Saturday, October 4, 2014

Overly Emotional Hypochondriac Father Weighs In

So my wife and daughter have weighed in so it's my turn to share some thoughts. Jodi mentioned a couple times that if she was incorrect about something that I'd jump in and correct her. That won't be necessary as she got the important stuff right.

Having to absorb the news during that first appointment was pretty tough. Between Jodi and I it's clear I'm the overly emotional one and I wanted so much to hold it together and keep Avery thinking positively that I'm afraid I may have swung the pendulum the other direction afterwards and in the car on the way home. Was I not compassionate enough? Did I hide too much of what I was feeling? Questions that will never be answered that bother me. All I know at this point is that I'm super proud of our little girl. Have you read her post? It was her first blog post and it was about her having to have spinal surgery. Talk about a challenge! I think my first ever blog post was about how I get frustrated with people screwing up my fast food order.

It's been a long, frustrating year since May. On one hand I have every confidence in Avery's surgeon and all of the staff at the hospital, on the other we have the waiting, and the waiting, and the waiting. Have I mentioned the waiting? I see that Jodi just did a post that talked about the waiting. I don't think it can be over stated how frustrating it is. Now, that being said, the big trade off of all this not costing us anything is the waiting. They can only do one surgery a month at the hospital and there's a lot of kids on that list, so we wait our turn. We get Avery checked every few months and when the tables turn she gets bumped higher up on the list. It's not a perfect system (don't even get me started on the second opinion we're still waiting for - and have been since the summer), but it's the one we have. Play the cards your dealt, I suppose.

So how's the overly emotional hypochondriac father doing? Not bad. I work for a medical imaging software company so I have access to all sorts of pre and post op scans from just about every medical procedure you can think of, including spinal surgeries. Pro tip: don't look at them. We don't get the story behind any of the images. They're all anonymous and are mixed in with different reports and a good many of them are extreme cases. Let's just say flipping through a database of random test data is the shortest path to a panic attack.

What I found more helpful was images of actual patients from a website of an actual pediatric scoliosis surgeon. You get to see things like this:

Images borrowed without permission from Dr. Lawrence Lenke - patient Molly F. 

This is an image of a girl five years post op who was a few years younger than Avery at the time of surgery. Her spine angles weren't the same but you get the basic idea of how it all unfolded. I'm not sure how Avery or Jodi feel about it for for me it's comforting to see what they can do and how it works out. It's also reassuring to know that this is a well established procedure and that Avery's surgeon has done more than a few. So there's that.

For now we go to yoga every Wednesday (big shout out to Mike at Breathe Into Motion Yoga Studios who has been amazing with Avery) and we wait (and wait and wait) for her follow up appointment on October 20, and as Princess Pants so eloquently put it, find our own way to make it not so bad.

- Dad

Friday, October 3, 2014

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.

Thursday, October 2, 2014

My side of the story

It all started when my brother kept itching at a mole. He was itching at it so often that mom decided to take him to the doctors. I didn't go with them so I don't know what happened, but when they got home mom asked me to bend over and touch my toes. I couldn't touch my toes but she got what she wanted, to see my back. And what did she see? A big fat curve.

                                                             Up Till Now
              So this is what happend from when we found out to right now on October second.
You already heard the story from my mom but here it is from me. So my mom comes home from the doctors with my brother and asks me to bend over and touch my toes so she can check for scoliosis. I couldn't touch my toes but I was still bent over enough for her to see the BIG CURVE in my spine. I'm still bent over and she's calling my dad over to see it, just to make sur shes not imagining it. And what do you know? She's not. I have scoliosis (BTW's SCOLIOSIS SUCKS!). So now you now my side of the begining. My mom  has already told the rest so I don't need to tell you again. But here's a tip, One of the things I've been thinking every so often now is "I can't do it anymore, I just can't. I wish I didn't have to worry about this anymore. I wish I never had to worry about this!" And yes I bet every one with scoliosis wishes they never got it, but really there's nothing you can do about it except have the surgery so, I deal with it and remind myself that after the surgery I'm gonna be 5'7! But that's only my way of copping with it, find your own way to make it not so bad and DON'T LET IT GET TO YOU!
                     
   Princess pants 👸


Monday, September 29, 2014

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.