Wednesday, December 16, 2015

Good luck Gonzalo!

i just wanted to wish you and your family good luck! I hope everything goes alright, and that it isn't too worry some.

Tuesday, November 24, 2015

Just an update.

so, today was my first time getting to do intramurals, which is an organized tournament of a certain sport that happens during my nutrition breaks at school, and it was really fun. In other not so exciting news, I went to the family doctors last Wednesday, and she said that I seemed to be doing good. And this Wednesday, tomorow, I get to go with my class to visit HIGHSCHOOL, which is really scary, and really exciting. Everything is going amazing, I have about 15 books I have to read, and Christmas is coming up. My brother and I build snowmen on Sunday, which is when I realized I spent  ALMOST ALL OF last winter in a bed, and it was awesome to play in the snow in NOVEMBER, because Canada loves the cold. It also meant I got hot chocolate ^_^

Have a nice end of November,
                              Princess pants👸🏽👸🏽

Thursday, October 29, 2015

hello again. Again...


I know it's only been a day but I already have more exciting news. So we went to the physiotherapists, and Jay get me to do my leg-y stuff, and all I did was two things, when he said that all I need is some stronger bands, and that I don't have to come back unless doctor Missuna says so or a problem arises. So yeah. I no longer have to go to the physiotherapists because I'm just that bendy. Not actually, but still.

Good luck Gonzalo and Gonzalo's family, and thank you so much Carla,

Talk to you as soon as something interesting happens, happy Halloween/ Saturday,

          Princess Pants👸🏽

Wednesday, October 28, 2015

hello again.

So I really should have posted last Wednesday, but I forgot, what with all of the exicitment. I got to do gym last Wednesday. It was AWESOME. It felt so good to finally be able to do stuff again. It was acctualy supposed to be last TUESDAY, but my class didn't have gym on Tuesday, so I didn't get yo do it. My teacher was nice enough to let us have QDPA (Qualified Daily Physical Activity) though. But anyways, I hope you're all doing ok, because I've been feeling fantastic. We carved our pumpkins for Halloween last night. Mine is a cat with devil horns and a set of wings. I think it looks pretty awesome if I do say so myself. Happy Halloween everyone, or if you don't celebrate Halloween, have a good rest of the week and weekend. So yeah. Gym. I never realized how much I missed it until I got   it back.


I'll try to update more often,
                 Princess pants👸🏽

Friday, September 18, 2015

Yoga

I went to yoga today. For the first time. In FOREVER. And it was amazing. I had so much fun. It was Realy nice to see yoga Mike again. I felt so, so, FANTASTIC afterwards. I know this post is short, but I just had to let you know. 

Once again, good luck Gonzalo, and Gonzalo's family.

Write again soon,
          PrincessPants👸🏽

Sunday, September 13, 2015

hello Argentina

 I was heading up to bed, when my dad asked me to come and look at somthing. That something was a note/letter/post thingie from a person in Argentina about how they read our blog, and that their son was having the same surgery I had, but in December. After reading that, I got a bit sad that another person had to have the surgery, but I smiled Realy Realy big, because My family and I were helping people out, at least a bit, just by writing down our experiences. And now I am writing this post. Literally one minute ago I read the note thingie. I just wanted to say thank you.

I wish you luck Gonzalo.

Until another day,
               PrincessPants👸🏽 (AKA Avery)

Monday, August 17, 2015

The Joy of Vance

Jodi and I were talking on the way up to the cottage. We both noticed that Princess Pants, not once throughout this whole ordeal, has even so much as mumbled a single complaint. Not one. Zero. She went to hell and back at a time in her life when she should have been looking forward to becoming a teenager and she never complained. Sure, she had moments where she was down, or scared, or wrote something on the blog like "I want to be a kid again", which is perfectly healthy and we're glad she had the outlet to do it, but day-to-day complaints? Zip. She took the really crappy hand she was dealt and she accepted it, and that makes it even more amazing.

So, on June 27 I did something hoping it would pay off and bring a big ole smile to Princess Pants' face: I sent an email to Taylor Swift and Vance Joy. Taylor is on a world tour and Vance is one of her opening acts and Pants loves them both (more so Vance, I think). I explained in my email what Pants went through and how she listened to their music and told them the story of her class wearing tiaras on her last day of school before surgery. I asked them if they would be so kind as to mention Pants in a tweet or send her an email or autographed picture. Somewhat jokingly I said that if they had a picture of them wearing a tiara that would be positively epic.

Well, on August 6 I got a FedEx envelope from Vance Joy addressed to Pants. It looked like it would hold an 8x10 photo and figured that Vance's manager or PR person sent one along from the stack they have in the office (I'm sure he signs a bunch every time he sees his manager for just such an occasion). Pants was up at the cottage with Grandma that day and we were to bring it up to her the next day.

Jodi noticed that the envelope was mailed overnight delivery and came from Edmonton and mentioned that Vance and Taylor were just in Edmonton. I reckoned at this point that what was in the envelope was probably more than just an 8x10 glossy off the stack in the office. I was right. I decided that I would record Pants opening the envelope to see if her reaction was YouTube worthy. It was.


Inside was an autographed picture, and a hand-written note which read:
Dear Avery, 
I find your bravery and strength inspiring. It means a lot to me that you have been listening to my music. I don't have a tiara on me right now, but I have decided to draw me in one. I'm on your team!  
(Looks more like a crown, sorry lol)
The video above tells you all you need to know about how well this worked out. Her reaction brought a tear to my eye and still does every time I watch it (which is often).

Thank you, Vance Joy, for making my daughter feel like the happy, elated, giddy teenager she deserves to be.

~ Dad




Thursday, July 30, 2015

Just a random wierd thought

So. My scar is thicker at the bottom, and I was touching it, and I suddenly realized what it feels like. You know when you get a new book and it has that plastic wrap over it? When you run your hand over that? That's why my scar feels like when I touch it but softer. And instead of there being a book inside of the plastic wrap, it's my spine, and instead of plastic wrap its fresh new skin.

Just a random, weird thought,
               PrincessPants👸🏽

Saturday, June 27, 2015

grade seven. The ( not quite) end

I wrote this a couple days ago, and forgot to post it, so here it is.

Before I had my surgery was an emotional time for me. I was both terrified and excited. Terrified that I would die in surgery, and excited that if all went well my back would be better forever. On my last day of school my whole class wore tiaras, and one of my teachers got almost all of the seniors to wear ones that they made in class.  It made me feel so fantastic. You have no idea how wonderful it felt. We got a picture of my class wearing tiaras, and I've kept it as my background picture on my iPad until just recently. That picture reminds that these people care about me, even just a bit. And I care about them. I've known most of them since grade two, and some since grade five, but I've still know them long enough to be sad that this year is over. Two whole months not seeing some of them. I know that I still get to see them next year, so it's not REALLY the end but it still fells like it. Were not leaving to go to high school, but we've starting preparing. I mean, we just survived our first year as a seniors, doing different subjects in gym, new stuff at track, millions of new things that we learned in all subjects, our first year of math in English instead if in French (which by the way, makes it a lot easier to understand) , our first year with history instead of social studies, our first year starting to get points towards the award of excellence, and much  more. This year has been full of good and bad things and I'm happy I got to spend it with people I did. Even the nurses and doctors were pretty nice. Thank you to everyone who's been with me on this journey, even if you didn't follow it as it happened. And I hope everything I've written (and will continue to write) has and will help you in someway as it has me.

Thank you all, 
                  PrincessPants <3

Thursday, June 18, 2015

I was thinking last night.......

I want to be a kid again. Shrink me down to six and leave me there. Take me out of this age where I'm responsible for lots of things. Where I'm not little anymore. No longer a child, a kid, where  I start preparing for the real world. Where everything I do matters a lot more than it used to. I hate it. I can't stand it. At first I was so excited. It was all I wanted. Now all I want is for it to be over. I wish I could have skipped it. Just gone from child to adult, so I don't have to go through this. Shrink me down to six, before I'm an actual person. At six your not quite a person yet. You don't have a personality, at least not the one you'll have for the rest if your life. At six even the most outgoing of your class is still a bit shy. At six fart is a word that makes you gasp because someone said a 'bad word'. At six everything  mattered in its 
own way, even if now the things that mattered then seem stupid.  At six daddy could pick me up. At six I could sit on mommy's lap. At six cars seemed like a fantastic thing (aside from me getting sick in them). At six life seemed perfect. At six you can have a temper tantrum, go to your saying you hate your parents, only to come out minutes latter crying and saying sorry and that you loved them. At six you got books read to you at night. At six you slept with a night light. At six You knew, with all your heart, no Mater 
what was said and done, that your parents loved you then and will love you forever. Now at times you feel like no one gets you. You want to believe that your parents will always love you but are afraid you will do something wrong. Now everything is scary. I'm afraid I'll fail school. I'm afraid I'll get fat. I'm afraid I'm too skinny. I'm afraid I'll get hill by a car. I'm afraid ill get kidnapped. I'm afraid that in high school ill smoke or take drugs. I'm REALLY scared about that last one. I don't want to be a teenager. I don't want to go to high school. I just want to be a kid again. To not be afraid to go into my parents room if I have a nightmare. To be able to walk around not worrying about what's around the corner. Or about what's ahead of me on life. To he able to snuggle up in my parents arms again. Please let me be a kid again. Please. 

Wednesday, June 10, 2015

The fall

Yesterday at 1:30 in the afternoon I went to go get some lunch from the kitchen. I got up off the couch and walked to the kitchen. By the time I got there the head rush from standing up off the couch to quick had caught up to me. I get head rushes when I stand up too fast, and this one was really bad. I passed out, and when I could see again I was lying on the floor in horrible pain. I stood up, slowly, and walked to the phone, all the while crying my eyes out and wailing. I called my dad but got voice mail, so I left a message (As I learned later, all it sounded like was a screaming banshee). So next I called my mom. It rang for a minute, and then just went silent. No buzzing, no mom, no nothing. So I screamed and cried until I remembered that my old babysitter, Stephanie lived really close, so I called her, and she picked up. I was so relived, that for a brief second, I stopped crying. But only for a second. In my hysterics  I tried to tell her what had happen. You know when your crying, but trying not to, and you start having these weird jerk pause breaths? Almost like hiccups? That was happening to me. Eventually she got it out of me that I had fallen, and came over right away. Buy the time she got here I had stopped screaming and was now just crying a lot. She helped me stop crying, and helped me get an ice pack, and then she face booked my parents that i had fallen. After a couple minutes my dad called. By then I had stopped crying, mostly, and we had figured out what was hurting. It was just a pinkish line parallel to my scar on my right side( and as we found out later, a bruised tailbone). My mom called minutes later and started to drive home right away. My dad called her and asked if when she would be home. Since Stephanie could only stay until 2:30. She said she would be home soon. And she wasn't lying. She was home by not quite two. Stephie stayed a bit longer, but then had to leave. We thanked her immensely. A short while after that my dad got home. He called the doctor and got us an appointment for today. Life went on. I was ok. This morning my mom stayed home and we went to the doctors. We got X-rays and had Subway for lunch, and than we went to the doctors. The only thing I was nervous about was not being able to go to Virginia for my moms cousins wedding. Doctor Missuna said that my X-rays were excellent, that I was fine except for a contusion (what ever that means), and that I was not allowed to drive to Virginia, but that I could be a passenger. He also cleared me to start physio and yoga. Yes!😃 when we got back to Cambridge we bought some flowers for Stephie, as that was the least we could do. It was a strange coincidence, as the flower shop lady's step daughter had just had the same surgery as me a week ago. That's all I have to say for now. I'll try to update more often. Write more latter,

                       PrincessPants👸🏽

Friday, May 15, 2015

hello again

Once again, hello everyone. Yesterday the one thing I failed to mention was that all of this couldn't have happened without the help of my dad. He planned it, he set in action, and he went through with it. He's the one who has all of the friends who donate blood. Any ways, stuff about my everyday life. I now go to school until 2:30, just half an hour away from a full day. I went to a movie without any adults for the first time ever, and I'm just doing amazing overall. I hope you're all doing as well as me, talk again soon

       Princess pants👸🏽

Thursday, May 14, 2015

It's in you

hello everyone. I'm really sorry that I haven't posted in a while. I'm about to make up for it. Right now I'm at Canadian blood services in Waterloo, meeting new people, and taking MILLIONS of pictures with everyone I meet. Don't get me wrong, it tons of fun. It's a really amazing feeling seeing all of these people come out to donate donate blood because we asked (and for other reasons too). We have people who haven't donated in years coming out to donate, people who've never donated before, and even one person who's tried three times and passed out at all of them trying to donate again. We got about 15 people in total, and just being here makes me feel wonderful even if it is tiring. I'm writing this  at 8:12 Thursday night, so I'll post another tomorrow morning. But before I stop for the night I would just like to tell you what it feels like to have something this nice happen to you. OK, close your eyes and. Wait never mind don't close your eyes. Imagine walking into your house one day and smelling all of your favorite things, seeing all of the people you love, and then having fireworks happen and candy falling from the sky, and THEN everyone in the room gives you a million dollars each. That is what it felt like to be me watching everyone donating blood to give back. It also feels like I'm about to explode into happiness. Talk to all of you lovely people tomorrow!

             p̤̈r̤̈ï̤n̤̈c̤̈ë̤s̤̈s̤̈ p̤̈ä̤n̤̈ẗ̤s̤̈😜

Friday, May 8, 2015

Bent But Not Broken Blood Drive Update

As Jodi mentioned in her last post we're having a blood drive in an effort to give back some of what Avery needed to get her through the surgery. Sign ups have been slowly trickling in, but we're still a few people shy of getting our target number of fifteen donors.

My company, Agfa HealthCare, has one of these old-timey looking popcorn machines that they let employees use every Friday. The company buys the popcorn, all you have to do is set up shop and pop the stuff (and clean up everything after) and you can sell popcorn for $2 a bag. The only conditions are:

  • You can only send one email to the office promoting your event and one email afterward thanking everyone (so as to not spam / pester everyone)
  • The money has to go to a registered charity
So, in an effort to drum up donors and donations we held a Popcorn Friday in support of Canadian Blood Services today and Princess Pants and The Dude came to work with me this afternoon to help sell popcorn.

My introduction email explained a bit about Avery and how she needed so much blood for her surgery and that we were looking for six more donors to round out our list or cash from popcorn sales to donate to Canadian Blood Services. 

Last night, Jodi got this awesome idea to make up t-shirts with pictures of Avery's x-rays on them promoting the blood drive. The kids wore theirs to school and I wore mine to work. They looked awesome and they were a big hit! 


I took the kids out of school around 1:00 and brought them into work and we started popping popcorn a little before 2:00. Someone had already given me a $20 donation because they were out of the office for the afternoon so we were off to a great start. Once the smell of the popcorn started wafting through the office it didn't take long for the donations to start rolling in. 

By 3:00 we had sold a lot of popcorn and a co-worker suggested that we take some upstairs on the rolling table and see if the office on the 3rd floor wanted any (he tipped us off that they were always in the mood for popcorn). 

So we trekked upstairs with eleven bags of popcorn and visited Watsec Cyber Risk Management. Less than 10 minutes later we only had one bag left! 

We sold a few more before the day came to a close for us (around 4:00) and the final tally was nothing short of amazing:

  • $238 ($245) if you include the 5 note someone gave us
  • Two blood donors for the drive on May 14
  • One blood donor who can't make the 14th but will donate at another point in the week


 I even had people tell me they would be away on Friday but would bring in donations on Monday!

All in all, it was an amazing success. The generosity of Agfa HealthCare Waterloo and Watsec Cyber Risk Management is quite something. I am very fortunate to be a part of such a wonderful and caring community.



In case you didn't do the math, we're still in need of 3 donors! 

Please email me if you can (afbutters at gmail dot com) donate on May 14th in Waterloo (6:35pm, 7:05pm, 7:10pm spots available). 

If you can donate but on a different day, of if you're out of town and you'd like to donate, just book your appointment with Canadian Blood Services (http://blood.ca) and let me know and I'll add you to our list of Bent But Not Broken Supporters. 

Thank you, all!

~ Andrew

Wednesday, May 6, 2015

The one where going to McDonald's makes me cry

Today is McHappy Day and we will be going. It is possible I will make multiple visits. On any normal day, this is not anything I would do - we maybe have McDonald's a half dozen times a year, normally on the road or otherwise in a pinch. But today we are going for McHappy Day, and that means the money will be going to support the most wonderful, amazing, kind services of the Ronald McDonald Houses (RMH) and other children's charities. 

I don't know how much we discussed RMH in relation to Avery's surgery, but there is one just across from McMaster. We were provided an application form, I even filled it out - but the idea that we might take a room from a family who was dealing with something worse than back surgery (major back surgery, but we knew she would be coming home once she was able) made me feel bad. Plus, we were something like 2.4 km over the minimum distance - and Dude was going to be home. What I didn't know until day 2 at McMaster was that there is also a Ronald McDonald House room, which has comfortable furniture, always hot coffee and other snacks and food (and aside from the coffee, none of it was from McDonald's ). This room was a godsend. This room had hot tea and fresh fruit, and just a place to sit that didn't have beeping monitors and call button alarms. This place was an oasis in the middle of the hospital, and I for one will do something as trivial as buy a Big Mac - maybe twice - to help make sure that room and the RMH are forever available for people who need them.  I really hope you never need them.

And one other little plug - whatever politics you may feel about blood donation - the blood bank always needs your help. You know Avery needed 15 donors worth of blood. You might have a friend who has had cancer treatments and needed blood. If you can, please donate. My Princess needed it to safely make it out of surgery - if you could help another parent say the same thing, wouldn't you want to?

Sunday, April 12, 2015

Out for a ride

Again it seems like nothing of  major concern has happened since the last update, but today it was finally a nice day, and Andrew cleared out of the garage and brought all the bikes down - and Avery just couldn't resist  so she went out for a little bike ride! I stood in the driveway the whole time, eagerly wanting to see her come around the corner on her bike. Her brother zoomed  down the street  and a few moments later, there was Avery - sporting the best posture ever and a smile that could have generated light. Quite honestly, it brought a tear to my eye.



She is up to over 4 hours a day of school, and adding a little more every week. Really, her recovery is going as good if not better than expected. I think Andrew noted a month ago that the hard part is going to be slowing her down. 

She was a little upset last week as we had our first thunderstorms of the season - she texts us every day to say she got home from school ok. Thursday's  text included a note about how she was afraid she was at risk for lightning strike due to her new hardware...

And I suppose we passed another milestone - Andrew and I went out in the evening and didn't have a second thought about leaving Avery with her brother. Last month he (ha, both Andrew and AJ) would not have been okay with that as she was still getting too tired and needed to rest, but no one linked an eye at it last night. Oh how wonderful life is these days.

Saturday, March 21, 2015

2 months post-surgery

I had to just look twice at that - has it really only been 2 months? So much has happened, but of late the happenings are often both so frequent and seemingly minute that I guess none of us stopped to write them down. So here is my list, if I have missed anything else exciting, I am sure Pants or Andrew can do a catch up post.

  • Avery has mastered getting her taxi, and she books it before we leave in the morning, so we know how long she intends to stay (2 hours a day before March break)
  • On March 13 she had an appointment with her surgeon. He was so pleased with the results he called in another ortho intern or resident to admire his handy work, and he sent Pants home with screen prints of the before and after so she could show her friends (Andrew and I both keep that as our screen savers on our laptops both home and work)
  • I learned that the surgeons did not make any lateral bends in her rods, which is to say she is pretty much perfectly straight. All the reading I did beforehand suggested we would be lucky to get her below a 20° curve post-surgery 
  • Pants learned how awful overdoing it in a day can feel. Following the Dr.'s appointment (including the 1.5 hours in the car) she wanted to go to school for the afternoon - it was the day before the break and they were going to be watching a movie and a basketball game, so we said fine. I picked her up at 3, and she went right up to lie down.  Friday was also Andrew's birthday, and that means dinner out. Andrew kindly chose Mandarin buffet as we knew it could be faster than table service, and we headed out before 5. Dinner was yummy, but by 6:30 it was pretty clear Pants was ready to fall over, so we headed home. And at 3:30 am she was up feeling so nauseous and scared of what throwing up was going to do to her back. I got a Gravol in her, but half an hour later she couldn't hold it in - and in her practical way, said well, I threw up in the sink so I didn't have to bend over and it was fine.
  • She was cleared for floating. Monday night Pants and Andrew went to the Y. Pants wore a scar baring tankini top - I love that she is so comfortable in her skin (because really, it is a pretty cool scar!)
  • Pants was excited the other day because she sat up in bed. I didn't get it, until she demonstrated that up until that point she had been rolling to her side and pushing herself up to sitting, but last week she just went right up to sitting.she was quite pleased with this feat.
  • Her grandmother came for a visit on Thursday and took her in to Waterloo for lunch with Andrew. Her appetite is definitely coming back as she ordered the dinner steak and wedges and got through half of it - then ate the rest for lunch the following day.
  • Her grandmother brought her a couple of vitamin E treatment to to help the scar heal, but Avery has asked if she has to use them, because as I said above, it is a pretty cool scar. We will keep them on hand should she change her mind.
  • She went out for another float - this time we confirmed she could in fact swim lightly, and that made it even better. I think we will try to get her in the water a little more often.
  • She walked over to her friend's house to see if she could come over - it isn't far, but it was the longest walk she has done since the surgery. It is so much nicer now that the snow has started to melt.
  • Yesterday she went to a movie. Another milestone as far as being able to be out and seated in one place for almost 2 hours, but she also needed a long rest when she got home.
So it is back to school on Monday. As odd as it seems, the new goal is for her to make it to the end of first nutrition break - we are suggesting she use the outdoor time indoors doing some homework. The goal is increased stamina and that break happens everyday, so she needs to be able to make it through it before we can add another class into her day.

So there - 3 weeks of progress, and more happening every day :)

Thursday, March 5, 2015

The Hard Part Is Going To Be Slowing Her Down

So we had a big birthday party for our niece who just turned two and were also celebrating a couple of upcoming birthdays (mine and my sister's). Our niece weighs in at 25 pounds and partway through the afternoon Pants comes upstairs carrying her cousin. Jodi and I had to explain to her that this was not something she should be doing until she received clearance from the doctor. It upset her a little bit and speaks to how good she's feeling and her desire to "get back to normal" as well as help out whenever she can, but until we hear from the surgeon it's best if she just takes it easy.

That was Sunday. On Monday Pants had her very first solo cab ride on her way home from school. Jodi drops her off in the morning and she stays for two or three periods (60-90 minutes) and then she takes a cab home. Everything went just wonderfully except for Tuesday when the taxi never showed up. She spent a good hour longer at school than she had planned. When I called her to see how she was doing the sounded very anxious and admitted that she was really starting to not feel well and just wanted to lie down.

The cab got her home eventually and we've not had any problems in the two days since, so that's good news. Pants started doing some homework as well but we keep having to remind her to do it instead of lounging around reading or watching YouTube videos. She likes schoolwork (except math) so it shouldn't be too long before she's back in the groove from a learning standpoint at least. Hopefully she will add another half an hour onto her in-school time every week and get back to full days by the time the snow melts (if it ever melts!)

That's all for now. Pants is doing really well and we go back to see the surgeon on the 13th (my birthday).

~ Dad

Sunday, March 1, 2015

make that a bad-ass scar

All the steri strips have been peeled off, and this is the end result, one bad-ass scar!



The scar is a little sticky still, and perhaps a little misleading as her spine in almost perfectly straight  but the scar is curved. I suppose the surgeon could only guess as to where her spine would end up once he was done.

Facebook has been super aweseome. We will be sure to share all the comments about just how bad-ass she really is.

Friday, February 27, 2015

Orthopedic shoes and a scar.

Avery is healing up nicely. She has been to school everyday this week and says she has been participating. She is all set up to take a taxi home from school starting next week once I return to work (has it been 6 weeks already?!?) We are hoping to get her to 1.5 hours at school next week, but she will let us know what she needs.

This week's excitement involved the purchase of some fancy orthopaedic sandals for Avery to wear around the house to help address her pronating knee.


Otherwise, her scar is healing up nicely and the steri strips are slowly but surely coming off.
Look at that cute little waist!

I am pleased to say that that is really all I have to report. Things are progressing well and Avery remains ever positive.

Sunday, February 22, 2015

We have reading!

Last night when I went up to bed around 10:30 I noticed Avery's bedroom was still lit up - assuming she had fallen asleep with the lights on, I went in - but no, she was still awake READING! It has  even a month since she has had the focus to read anything, so this is a moment we have been waiting for. Shout out to her teacher for the gift of books as that was what she finally found interesting enough to pick and and keep reading I am sure by now that book is done.

Avery has been complaining of sore legs this week, and my non-medical assessment is that she really needs some better arch support as her knees are pronating  - so for now she is wearing her croc slip on sandals and we will see about something a little better - birkenstocks or mephistos, but we need it to get a little nicer out first I think.


Wednesday, February 18, 2015

A New Routine

It's been a while since I posted so I thought I'd chime in with a few observations and thoughts.

I've been back at work on a normal schedule for more than two weeks. I get up early, being careful to not wake Jodi up on my way out of the bedroom. 50% success rate so far! I get to work before 7:30am and stick around until 4:15pm or 4:30pm. By the time I get home Jodi has made some fantastic dinner and even done some of the dishes (best. wife. ever.) Throughout the day I get text messages of Pants' progress and I have to tell you, it's always the highlight of my day.

Pants is walking better, and moving around in general much more naturally every day. We're told it is going to be six to twelve weeks before she starts to feel "normal" again so to see visible progress in that direction every day is just great. We're looking into taxi's for her to get home from school until she's comfortable enough to walk from the bus stop to our house which likely won't be until after the snow clears.

Our superstar patient did a full hour at school today! That is such a big step and bodes well for getting her back reading again. Jodi sent me a picture of the part of her back where the Steri Strips finally fell off and the scar looks good. Nice clean cut, not too wide. Every day I find a new reason to be impressed with the care she's received and with her in general.

Sorry, this post is all over the place.

Things I've noticed:

  • I'm still walking around with this tension in my upper body. It's not near as bad as the first week after surgery but it's still there. I'm told this could take a while to subside
  • I am still sleeping like crap most nights. As an insomniac who was sleeping not-too-badly before the surgery, this is frustrating. Some nights are not too bad though and that gives me hope
  • Pants does at least two things every day that make me so proud
  • I'm really going to miss having Jodi home all day. If she's even half as productive in her office they're going to love having her back
  • The Dude is handling everything quite well, but I have noticed he's more cuddly and asking for more hugs; two things I am more than happy to provide in great excess
  • I never get tired of showing people the before and after x-ray pictures and before and after height picture

The next phase starts when Jodi goes back to work. I think she'll drive the kids into school and then Avery will take a cab home whenever she feels she's had enough, eventually working her way toward a full day, after which I'll tweak my work schedule to pick her up or she'll take the bus so she only has to walk the last couple hundred meters.

~ Dad

Tuesday, February 17, 2015

The great return

Avery's first day back at school lasted about 30 minutes. I decided I would just wait outside the school in my car so we could make a quick return home. It also became quite apparent that a taxi will be the better option - at least until she gets up to half days,  at which point we will consider revisiting the bus as an option. She stayed in bed for nearly 3 hours when we returned home. We'll see how that plays out again tomorrow. :)

And tonight she came running down the stairs  visibly vibrating and unable to speak - turns out she pulled off a couple of the steri strips and was rather concerned she would split in 2. We reassured her that the strips are in fact supposed to come off and perhaps should be coming off, and she settled down and went back up to bed.

That's all for tonight.

Monday, February 16, 2015

I'm going to school!

hi there. I'm back and I'm here to tell you about all the exciting adventures I've had since we last talked talked. First we try to go to the pedicure place but I got a little bit scared so we ended up not going, then the next day I went to visit my school. It was realy fun getting to see everyone! The teacher even brought donuts! A couple hours after that we went to the pedicure place and got our nails done,but they took a little longer than we thought they would, so we were a little late picking my brother up from school.two days after that I went to visit my moms work for a baby shower and pizza. That was also realy cool. I sat up for about half an hour, but then I had to take a walk. After the walk I realized that I realy needed to lie down, so we left to go home. But what I really wanted to talk about was tomorrow.  Tomorow I get to go to school. I mean actually go to school, not full time but just for a little bit. We're hoping for an hour but we might only get half an hour or so. Still it's realy exciting! Have a nice day!

                       Princess pants👸

Wednesday, February 11, 2015

3 weeks post surgery and all is well

We have hit the 3 - week post surgery mark, and of course Pants continues to amaze us. While I keep waiting for the moment when she picks up a proper book to read, she has made advancements in her ability to concentrate and reason - through playing Paper Mario on the Wii in the basement or Zelda on the Wii U upstairs. Both require reading and some logic to advance through, so I take it as a win.

And her appetite is back - though she needs to eat smaller meals at several points through the day - but I have read that is better for the body anyway.

Oh, and she is off the heavy pain meds altogether - we have kept a small supply, but I think they will be disposed of before long. She can take tylenol or advil as she needs, which she asked for today - though not for her back, but rather her legs - she thinks she might be having a growth spurt!

She can shower mostly standing, but likes to have the bench available, if just to enjoy the warm water running over her back. I was helping to dry her hair and noted that the top 2 steri-strips have curled up at both sides, so I went to remove them and she panicked and screamed not to take them off - seems she is a little concerned she will rip right open without them. So I left them and reassured her that that is not at all the case.

We are off for a pedicure - fingers crossed this isn't too much for her, then after a rest and some dinner she is going to stop by to say hi to Yoga Mike and the class she practiced with. I am so very thankful she and Andrew attended this class together - the number of times people remarked at her leg strength while in the hospital was always responded to with a mention of squats and yoga practice - and every single person who heard this paused for a moment to think about it then nodded as if to acknowledge it made sense. A few even asked her a little more about it. Hopefully in a few months she can start back again.

Today we researched bus routes and schedules as an option to get her home from school - though I will also check with a local taxi company to see what we can do - I don't foresee her walking the 2 km home from school again this school year, but who knows - maybe once the snow clears she will enjoy a 2 k walk with her brother. The bus runs every 30 minutes from right outside her school and in under 15 minutes has her 200 meters from home - we may take a test run this week to see how it goes as I don't think she has ever rode a city bus in her life,  and definitely not alone.

We almost made it our for a pedicure, but then she started to cry. Maybe it was too much. She said she wanted to go, she showered and got dressed - we even had her shoes on. Another day. She just needed a rest. I think she is so terribly freaked out about not being able to control how she is feeling or the fear that she will start hurting and not be able to do anything about it - she honestly was looking like she was when we were last at Dr. Missuna's and she desperately needed to lie down. So she is lying down. Hopefully the trip to the yoga studio will be a success tonight.

And just as I was leaving to pick up the Dude from school, Avery's teacher called to see how she was doing - I heard 'awesome' then had to leave. Since I am driving anyway, I normally drive home one of Avery's friends - and today she asked if she could come for a visit. I think this day has come together just fine.

Here is Pants looking ready for yoga :)


Friday, February 6, 2015

17 days post-op

So here we are at the end of week 3 - seriously?  3 weeks? Well no, 17 days  but the end of 3 weeks that I have not been at work and the bulk of this adventure began. Avery's aunt was by yesterday and couldn't get over the difference from her hospital visit 2 weeks ago and now. And how tall Avery is! This 12 year old towers over her aunt, and that made Avery smile.

Since Avery  cleary does not need constant attention, I have been taking advantage of the time and exercising a little in the basement, well today Avery came down to hang out. Since I was at the balance game portion of my wii fit activities, Avery thought she might like to try as well. So she managed to do 6 minutes of activities, including deep breathing, basic step (which was funny to watch as she isn't so coordinated) and the soccer ball headbutt one. But then she needed to rest. I still think 6 minutes is better than no minutes, and she was very pleased with herself for having accomplished even that.

In other news, she is almost fully off the meds - she took one at bedtime last night, but hasn't had anything since. We'll see if she feels she needs the nighttime one tonight, but I think she could manage on Tylenol - how crazy is that?!? This kid's ability to heal astounds me.

One common theme we have noticed is that if she over exerts herself, she gets an upset tummy later in the day - but she is also quicker at excusing herself to lie down as needed.

So now that the mind fogging meds are leaving her system, I will continue to watch for those signs of readiness to start heading back to school - my avid reader has not picked up a book in weeks - mind you she also just started watching Grey's Anatomy on Netflix, so I may have lost her for a few more weeks (she did wonder if these people all just signed consent forms so they could film them in the hospital and I explained they were all actors -then she mentioned how good those surgeons seem - had to explain that they are also actors...). She tries to sit up a little each day, but still prefers to be mostly, if not fully, reclined; but I think that will come along soon too.


Tuesday, February 3, 2015

Hi! Nice to talk to all you guys again. I'm healing up quite nicely and I'm sorry that I haven't posted in a while, I've been a bit distracted with everything else but I'm gonna post about all that right now.

The first thing I remember after coming out of surgery is my parents saying it was 9 o'clock. The next thing I remember is getting a popsicle because I burped which I felt stupid but apparently is actually really important . The next thing after that that I remember is standing up and walking to the washroom. That also seemed to be quite special to everyone else and I understand because that one was also a big deal to me. Right then I could feel how difficult it was going to be to do everything else and I had to do, like walk upstairs, sit upright for a long periods of time and get out of bed without handles to help. It was right than that I really realized how drastic what they had done to me was. For goodness sake, I had 27 screws and two metal rods in my body and they expected me to be able to touch my toes, put on socks and shoes, and live like a normal person. I was terrified, but at the same time I was amazed at how much I could already do.  I could already get up. I could walk a little bit and I could go to the washroom. That all may seem really small and insignificant to you guys but it all seems so big at the moment. It all seems so important.

I hope you can learn from my words, and I hope that you never have to do what I had to do.

Thanks for reading,
               Princess pants👸

       

Saturday, January 31, 2015

Just a few random thoughts

Avery, as a 12-year old girl does not own many button-up tops. Button-up tops, however, are the only kind she can get on.  Those, and spaghetti -strap tank tops that she can step in to and pull up. She is still finding herself warm most often, so the tank tops work in the house, and I bought her a new button-up to go with one she got at Christmas for when we need to go out. She is gaining strength and flexibility every day, so think she will be back in sweaters shortly, but if not, we may need a new wardrobe to account for her added height anyway.

I don't recall if we mentioned how her hips,  knees and ankles were all cut up from  the rigors of surgery, so she is also finding that only a few of her underpants are comfortable as most of them the band runs right across her scabby hip bone.

Today we left her home for a few hours with one of her friends - she doesn't need constant care  but I also am not ready to leave her home alone. On day one she could not put the feet up on the La-Z-Boy, but now she can - but she also can still get stuck leaning too far back and cannot pull herself up enough to get out of the chair, so someone to rescue her is a good idea.

I told her my signal to start talking about school again is when I see her reading, so she tried today, but couldn't keep her focus to make it through a chapter. She is still on the good drugs, so I give it another week before she starts thinking properly again. She is also curious how she will handle sitting in her desks, as she can currently only handle being up at the table for about 15 minutes before she needs to recline or full on lie down.

She is still using the jerry-rigged safety rail to get in and out of bed - I knew we were keeping that old sewing chair for a reason! But she pretty much skips down the stairs, so that came back like nothing.

Yesterday I was out  a quest for a bath bench, which I found, but then had a laugh in the evening after Andrew went to install it - I seriously forgot the kids have a 1 piece bath/shower thing, so there is no lip on the wall side for the bench to rest on - Andrew made it work though  and Avery enjoyed her first shower in 10 days.

She has had to lose her modesty, as there have been a number of things she never would have done in my presence before surgery that have happened post - surgery.  Yesterday she called me (on the walkie - talkies - it is so convenient to have these as we are past baby monitors in this house) to come help her dry off after the shower as she still can't balance and bend with any ease. But she was able to get her arms up high enough to brush her hair, so still progress .

Otherwise, as long as we have pain meds, a pillow and some water she can handle most anything we have thrown at her. She eats dinner at the table with us, but gets exhausted by the effort to cut up her food. Her first food requests were all finger foods, I thought for ease of eating, but she later told me that our utensils weigh too much - things I have never considered before.

Before her appointment in Hamilton yesterday she asked if we could go out somewhere. By mid - appointment she had fully changed her mind. I am hoping she will be up for a visit to school this week - her classmates have been amazing and I think it will do her soul good to see a few more of them in person.

That's all. Just a few random things in case anyone is reading this as a guidance document for their own kid.

~ Mom

Friday, January 30, 2015

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

Wednesday, January 28, 2015

Ten Days, Two Inches

I went back to the office on Monday so that's why you've seen so many posts from Jodi over the last while. Jodi's taken a leave of absence to stay home with Pants for the next month while she recovers. I get to work. So it goes.

I don't have a whole lot new to update you with except to say that Princess Pants continues to exceed every expectation. She's walking with a bit more confidence every time she goes for a stroll or up and down the stairs. She can get in and out of bed on her own. Even her appetite is returning, albeit slowly.

Avery promises to write a post soon to let you all in on the events of the past week from her perspective. Please be patient as pretty much everything she does is exhausting and typing out a big post will drain her.

In the meantime, I took some before and after photos and put them together side by side so you could get an idea of the difference. I flipped the before picture so the lines would line up a bit better so imagine her bent the other direction for the pic on the left. Also, this is far from precise. I didn't get the angles and distances quite right so the proportions weren't perfect. Nevertheless you get a really good idea of the difference.

Left: Before surgery (Jan. 18). Right: After surgery (Jan. 28)

For those who many not have seen it in a previous post the difference in height is 5.5 cm (or roughly 2 1/4 inches). Pants now stands at an impressive 168.3 cm (5' 6.25").

~ Dad

Tuesday, January 27, 2015

Home again, home again, jiggity-jig

What a day! As we readied ourselves to go home, one of the nurses found us a  laying hair wash thing, so I washed her hair.


Pants felt like a new person once she was cleaned up.


About an hour later, we were cleared to leave - conveniently at about the exact moment Andrew arrived, so Andrew gathered all our stuff and packed the car, and Pants put on some pants so we could go home.


The drive home was uneventful, and Pants was eager to get home. Once in the house, she took up court in the living room and asked for a toaster grilled cheese. I whipped that up for her and then she ate the whole thing!  That is the most food I have seen her in a week!


I went out to fill her prescriptions and pick up the Dude - who was leaving school with one of Pants' best friends, so I brought her home for a quick visit. It was quite exciting to see Avery awake and engaged for the whole visit - leaps ahead of 2 days ago!

While I was out, Andrew managed to measure her:


Yep, 5.5 cm or 2.25 inches taller!

She requested food that doesn't need utensils for dinner, so we are going to try pulled pork sandwiches.

Next visit to the surgeon is on Friday, so we'll update later.

Last hospital day :D

Night 7 was by far the best one so far. Pants fell asleep before 9 and woke up around midnight for a bathroom trip - but this again worked out as midnight is a med round. She fell almost immediately back to sleep and woke up again around 3:30 for a quick trip down the hall, then climbed right back in to bed and was asleep again before I had her covers pulled up. She slept until 6:30 and then decided it was morning.

I had a tepid shower in the family shower unit. Refreshing!

Xrays have been completed - though Pants really did not like the process, mostly because the wheelchair did not support her head and that made it hard for her to focus. I stood behind her for a bit and let her lie her greasy hair on my belly. The orderly was taking too long so I brought her back up to the ward by myself.  We walked past the main entrance and she was quite happy to feel the breeze coming through the doors.

Her new nurse has said there is some sort of hair washing apparatus that can be brought in, so hopefully we can get that taken care of as she is still another week away from being allowed to shower.

Andrew is getting the house set up - we think the lazy - boy on the main floor is out best interim solution, though for the past 2 days she has preferred to be flat on her back. The fireplace living room gets some normal tv plus the netflix so it maximizes her watching options and is beside the kitchen.

So now we wait. Hair wash, doctor visit and release orders. Next update from home :)

Monday, January 26, 2015

Climbing stairs like a boss

Another productive day, though without a clear release order for tomorrow, but we are optimistic it will work out that way. The resident who was by today said physio just had to clear her, to which I replied that after she sprinted up and down the stairs, physio said they don't need to see her again, so I took that as cleared.

The steady flow of pee has finally tapered  off as the last of the surgery/iv fluid build - up has been passed, so we are at a much better walk frequency.

She still has no appetite, but tries to eat something each meal - I didn't even question her when she spit out the 'grilled chicken thigh' as it must have tasted like it smelled - so she agreed to some fruit loops instead. I would love to see her actually eat like she is hungry, but right now she finds the effort of sitting up and moving food from tray to mouth exhausting. There is always tomorrow.

The other accomplishment for today was leaving the ward on her own feet to the playroom and back - without stopping as she didn't think the chairs looked too comfortable.

So I think we just need some xrays and then we can leave, but apparently there is a process to that and it hasn't happened yet. We get asked by lots of people about the release plans and have to say we don't know. Maybe I will just tell them we are leaving tomorrow and see what happens.

Here's to hopefully a more restful sleep for both of us.


All flushed out

Just a quick update from evil night 6 on 3 B.  Avery found it impossible to get comfortable in her bed, and just when she would settle down, the urge to pee would hit - like every 97 minutes - so we'd get up to take care of that, then spend 80 minutes getting comfortable... you get the idea.

At 4:00 she thought I was sleeping too soundly, so she decided to just go to the bathroom by herself. Like got out of bed, slippers on, all by herself. Unfortunately for her, she dropped her gown on the floor and I jumped up to find a nearly naked Pants just standing there. That wake up worked out as she was due for the 4 hour pain meds, and I had asked that if she was (finally) sleeping to skip that dose.

So far this morning (let's say morning started around 7) she has been down the hall to the washroom three times, nibbled some breakfast, sat in her chair for an hour and is back in bed waiting on the physiotherapist and x - rays.

I am still holding out for a nap, so my uber comfortable hospital cot is still in bed form (it converts from a chair).




Sunday, January 25, 2015

No strings attached

What an amazing day! I arrived at the hospital shortly after 9 and Avery was still munching on her fruit loops and banana for breakfast. Lisa, the physiotherapist arrived around 10 and Avery was pretty quick to get to standing and walked down the hall right to the washroom.

While she took a seat and tried to relax a little, we took advantage of the sink and towels and cleaned her up a bit for her first non - family visitors. The walk back she pushed her IV pole and only held Lisa's hand for comfort more than support,  then turned herself and sat down without any help (well aside from me opening the back of her gown - she is very hot with ice brick extremities).

She stayed sitting for over an hour, briefly spoke with her visitors then got back to standing with little assistance and back to bed. Her IV was bothering her, so after a few complaints her nurse removed it - and didn't replace it! She said she would wait until the resident showed up, unless Avery started peeing much darker than coors light.

Her room gets lovely daytime sun, but as a result, her room gets wickedly hot while the sun is up, then cools off fast when the sun sets. Pants' mannerisms remind me of me when I was having her - hot and not wanting anything on me and no one to speak to me.

Then she ate lunch 2.3 fish sticks, some carrots and one Dad's oatmeal cookie. She needed a little rest, but at 2:00 asked me to take her to the washroom again, so since dad was gone, we called over nurse Sandy and trekked down the hall - me with her catheter bag hanging off my jean pocket as she no longer had her IV pole to hang it off of.

She walked back that time all by herself - me trailing a step behind with the pee bag. She got herself seated with no help and watched some tv for half an hour or so. I needed to grab some lunch and left for about 10 minutes, and noted her room was on the call board when I re-entered the floor so I hurried back in. Seems she wanted back in bed - so we just did that - she used her awesome squat muscles and pushed up to standing then sat on her bed and lay down - all by herself.

Around 4:00 her surgeon showed up (and scared the pants off nurse Sandy!) And ordered the central line out - but then volunteered to do it himself. Seems that one gets stitched in to place, so he removed the stitches and left the nurse to bandage it. He also told her she could remove the catheter.

So by 4:30 she was officially line and tube free and can roam as she wishes. She does have to pee in a 'hat' to measure her outputs, but that is nothing.

Oh - and in case you didn't know already, the patient services at this hospital are amazing. We were invited to a toy give away at 2. I figured McDonald's toys - but no, these were full size amazing toys.  Colour explosion kits, trucks, dolls, colourings sets - and all the name brand ones. Free. Just for being here. She didn't feel up for the walk, and I was going by around 3 when they were leaving and was called over to see if there was something she might like.

I anticipate a couple more walks tonight, then x - rays tomorrow and more physio with Jill and maybe bringing Pants home by Tuesday.

So here is Pants - no strings (wires or tubes) attached :)



Post Op Night #4 and a HUGE Morning

Batnurse was assigned to Avery again last night but she had on a different t-shirt. This time she was Super Mario!

Avery had a rough night. She couldn't get comfortable and was complaining quite a bit. She did manage to doze off a couple times but I think I slept more than she did. There's a baby on the floor now and let's just say the poor thing has one hellofa set of lungs.

She is attempting to eat breakfast because she knows today will be a big day and she's going to need her energy. We're going for a couple walks and will extend her range past the hallway corner and hopefully to the bathroom!

The pain doctors were here and suggested Pants stop using the pump and instead switch to a combination of short term (4h) and long term (8h) hydromorphone pills with Tylenol by request.

---------------------

So the weekend PT came before I could post this and much has transpired. Pants walked all the way to the bathroom! She spent some time freshening up and looks like a whole new person. Not one to settle for one stretch goal she decided to kick things into high gear and make the walk back with nothing to support her but her IV pole and the PT's hand - and the PT says she was barely using it!
She's resting in a chair now as we await the surgeon to remove the mainline in her neck as well as a whole whack of tubes.

She was granted anything she wanted as a reward for her spectacular efforts today. Her choice? A glass of water, some silly television, and to be left alone for some peace and quiet!
Have we told you how much we love this kid?

~ Dad


Saturday, January 24, 2015

Day 4? What time is it? Where are we?

Another eventful day at McMaster. Avery showed her stubborn side this morning by refusing to do her physio until I got here, even though she knew that would be after 1:00.

As not to totally embarrass her, let's just say she ticked one of the 3 things she needed to do to be able to go home off that list ;)

The physiotherapist arrived around 2:30 and we had already gotten the room all prepared so as not to waste any more of her time.  Avery was entirely bewildered about how it was she was supposed to get from lying to standing, but after a little refresher got to upright. She walked twice as far as she did yesterday and even a little faster. She'll be scooting down that hallway in no time. And Andrew and I were cleared to be her hall shuffling escorts - so if he is back tonight perhaps we will try to get that second walk in after all.

Since she was feeling a little flushed, we just did up her gown instead of adding the robe today - which only sucked for the entire time she was sitting as I hadn't been quick enough to untie the back and she found it terribly restrictive to sit in. While she was in the chair I wiped down her legs, I guess that is almost a bath. After just under an hour, she was so uncomfortable she felt she needed back in bed. We did manage to get her some fresh sheets and a clean gown. I hope we are getting closer to losing some of her tubes and lines,  but have decided asking doesn't really do much for us

I was quite pleased when Avery ordered the fish sticks for dinner - and when they came she even ate 1.5 of them. Protein for the win!

Otherwise, it seems Pants keeps herself quite cool so the finger monitor keeps not being able to get a proper read. The one nurse was going to try a toe, but then felt her ice brick feet and  immediately went to find a heated blanket to wrap around her toes.

So now we wait for Pants' wishes for the night. Andrew is planning on coming back, and I promised the PT I would be back by 9 am,  but we'll see. Sometimes a girl just wants her (less snoring) mother as her roommate.

If anything else exciting happens, we'll be sure to post.


Post-op Night 3 and What's On Tap for Day 4

Last night the nurse was wearing a Batman t-shirt. She's been my favourite so far :) Avery took her Tylenol and long acting oral pain meds (only 3 pills) and then hit her morphine pump. A couple minutes later she started talking in her sleep, "When's the next course?"

"Four hours sweetie. Batman will be back in four hours."

I had a dream that a couple friends had me over for dinner and instead of offering me a regular bottle of wine they took out this wine bottle that had a peel back side. They lay it down on the counter, took a bread knife out and slid it through this lengthwise opening, and cut me off a slice of fish. I think it was a Northern Pike Grigio.

Now I'm beginning to wonder if maybe Batnurse wasn't slipping me some of the good meds in the water she brought for me.

Pants had a rough night. She couldn't get comfortable. Also, one of her IVs was leaking (down her arm this time, not into her arm) so she probably wasn't getting her full dose when she hit the PCA button. They got her IV switched over this morning and hopefully that will improve things. We need her to hit the machine less so she can transition to oral meds (a requirement for going home) but she needs to also manage the pain so she can do her physio. It's a balancing act that she hasn't quite figured out yet.

Today we are going to focus on getting her eating more and walking more. The surgical resident figures she'll be standing on her own comfortably enough by Monday so they can take some X-rays. Her goal for today is to get up and walk twice and by the end of the second trip travel almost three times farther than she did yesterday. 

Aunt Stacey will visit too with a possible appearance from The Dude (who misses his big sister) so it's going to be a full day.

Jodi's going to tag me out after The Dude's bowling and I'll go home and get some proper rest before coming back later tonight.

~ Dad

Friday, January 23, 2015

Post - op Day 3

It truly amazes me the progress Avery has made in these past 3 days! Today Avery added walking to her list of accomplishments post - surgery. After she was done with the walking and settled back down, she said the walking didn't bother her at all, but the getting up to walking and the sitting back down afterwards hurts - and that hurt scares her, so she doesn't really want to do it. And I feel like perhaps we have different motivations for this, so I will need to rethink my encouragements. Pre - surgery we had explained that in order for her to come home she needed to eat, poop, and walk. Post - surgery we have added the interim step of the removal of the catheter and all her lines including her pain pump in the pre - pooping stage. Today she said she didn't really want the catheter out because then she would have to get up and walk to the washroom ... so I need a better sell.

I was excited when I got here today to hear that he ate a whole apple. Lunch didn't go over as well with all the walking and sitting in a chair for 3 hours, but I held out some hope for dinner. Aunt Kari showed up mid afternoon with the promised snuck in mint chocolate chip ice cream from Baskin Robbins, which Avery gratefully accepted. She managed to eat a tablespoon or so of that then needed a rest. One of the excellent staff came by to see what she wanted for dinner - the Friday night special being meatloaf with mashed potatoes and peas - she wasn't interested in the meatloaf, but asked for the potatoes - with gravy - and a bowl of soup and some apple slices. This was apparently a very odd dinner order, as the guy who brought up the tray called me to make sure this was actually what she wanted. She ate a tablespoon of potatoes and a spoonful of soup then pushed the tray away. I think she is starting to get the link between food and poop.

She has been drinking tea. Maybe not the ideal beverage for a 12 year old, but on the beer scale of urine colours, she is clearly sufficiently hydrated.

The video chat with her class did her wonders, and the cheers and applause when she announced she walked was amazing - I think Andrew said it brought a tear to his eye, well it did to mine too (mind you when I stalked by one of her friend's house this morning to pass on that it would be nice if they could call her again today, I had  tear then too)  she really has some awesome friends. Her teacher is hoping to make it up for a visit, if not Sunday then early next week, and around dinner her Principal called to see how she was doing.

Andrew said she had been consistent with her pain pump for the first 2 days at about 200 hits each day, and unless something goes south later today, I am certain that number will be significantly less tomorrow - which also heads us the right direction to transition her to oral pain meds and losing yet another line.

Andrew and I just moved her bed so she could still watch TV while she is on her side - I hope the nurses aren't upset :)


Thanks for following!


She Walks!

We have had a great night / morning. Pants woke me up a few times asking for water and only gave me minimal grief when I said she had to sleep instead of watching TV.

When morning finally came she was feeling good and ate a whole apple and finished her apple juice. The first substantial amount of real food she's eaten since Monday night (though she did manage 1/3 of a piece of peanut butter toast yesterday).

The physiotherapist came by at 9am and Avery was still digesting so she asked that she come back in half an hour. When she returned we took a few minutes to get every standing up and then it was out into the hallway with her. She walked out about 8 feet and then walked about 6 feet back and has been sitting in a chair for almost two hours now. She's positively exhausted from such a busy morning.

Her whole class video called shortly after her journey to the hallway and back and when they all heard she had taken her first steps they erupted into applause and cheering. Brought tears to my eyes.
She's resting now and we're just keeping an eye on her abdomen. The drugs work a number on the GI system and we want to make sure everything is okay there. Hopefully the neck IV comes out today too.

That's it for the morning of Day 3 of post op. I have lost all sense of time.

~ Dad


Quotes and SATs

"I want to go home. Why can't I just go home?"

"I wish I could live a different life until all this was over."

"Why is everyone asking me to hurt myself?"

These are all things that Pants said to me over the last 8 hours, the last one just before midnight. Her oxygen saturation levels were dipping below 90 even though she was breathing just fine (95 or better is what we want to see). The nurse was asking her to cough and take deep breaths and that makes her back hurt. I was getting her to breathe deeply and her levels were getting up into the 90's again but would dip back down after she stopped the deep inhalations. Apparently this is common when kids (and possibly adults) are on morphine and sleeping deeply. At least that's what the nurse told me. I Googled it and didn't get the search terms right I'm sure because all I found were links to terrifying studies I could have gone all week without having seen.

Stupid Internet. 

The nurse went away and came back with a cylindrical container of water that she attached to the oxygen hole in the wall and then hooked up one of those over-the-ear and up-your-nose plastic tubes. Immediately her SATs spiked back. The oxygen bong was working!

I felt better and thought of Vinny Barbarino. Pants said to me, "I feel like Hazel Grace". I asked her if that was April Grace's mother or grandmother and Pants made a face; one of sheer disappointment that, had she been in a healthier mood, would have come with a  "Dad-dy!" (if you know my daughter you have heard this many times before). She then informed me that Hazel was the terminally ill kid from The Fault In Our Stars. I made sure she knew that this was a little different and that she didn't have cancer, she just had morphine. She hit her button and gave me her best smile. That kid has got impeccable comedic timing.

All was well again. Now if we could just the the code red in sector whatever to stop that would be great. Also, they are performing maintenence on the code red system so if you have a code red dial extension 5555 (or get in touch with Colonel Jessup).

To wrap up the evening's midnight festivities she closed with a quote that would make Charlie Sheen proud:

"I just took five pills!" [all at once]

*drops mic*

Thursday, January 22, 2015

Day 2 in the books and we take some questions

Jodi has made her way home after a short visit from The Dude and grandpa. Pants wasn't too alert but did manage a couple smiles. Dr. Missiuna came by when I was down at dinner and said that she was still ahead of where they expected her to be. That's good news but she's still in a lot of discomfort and just wants to go home.

She's due for vitals check and more pain meds at 8. The nurses will be by at 12, 4, and 8 and Jodi will be back sometime before 10am. Hopefully we can get her up tomorrow as she only spent about an hour sitting upright today.

The night nurse just came in and discovered that her left arm was experiencing infiltration. That's where the IV leaks into the arm instead of the vein. It was all swollen and tight. Also, not all her meds from the pump were getting into her system. The nurse switched the lines to her right arm and took out the IV from the left arm completely and Pants's mood improved immediately. Hopefully at some point tonight they'll take out her main line - the one that goes into her neck. Fewer tubes is good news.

Now for some questions from the press gallery:

- Will they ever remove the hardware in her spine?
- Will she still grow? If so, do they adjust the hardware?

The short answers are "no", "yes", "no". 

It's much too risky to have to open her up again and unscrew the rods. It's a terribly invasive surgery that involves the spinal column so once they're done with the installation they leave it there forever. There are cases where they have been removed but this is very rare. As for growth, she is growing in two places: her legs (femurs) and her spine. Fortunately, due to her age and physical development she does not have too much spinal growth remaining (the second opinion doc at Sick Kids estimated a couple centimetres). 

The area that's fused is 14 vertebrae and there will not be any further growth in that area. As such, the hardware will stay the way it is and her vertebrae will fuse together and that's the spine she'll have for the rest of her days. I gotta tell you though, from what I've seen to this point it's mighty fine looking. Such an improvement over the crooked, asymmetrical one she had before! Now, it's possible she may realize some growth from the remaining vertebrae but it will not be significant. She will still grow in her legs though so she's not done getting taller quite yet.

If anyone has any other questions just leave a comment or send us a message on Facebook or via email (potatochipmath at gmail dot com).

~ Dad