Wish Trip – Day Four Animal Kingdom

We woke up this morning and got ready.  We were going to Animal Kingdom today – something that we had all been anticipating!  First off, we ordered the breakfast cart to come to our villa.  It was encouraged, and we thought the kids would think it was neat.  A little golf cart came rumbling up the street and parked right in front.  The volunteer told us to take whatever we wanted…”take it all if you’d like”!  The kids each picked their continental style breakfast and went into the villa to eat it.  After breakfast was done, the House of Hearts called to let us know that there were horses brought into the village and if the kids wanted they could go for a horseback ride.  We walked down to Keaton’s Korral where we were met by a tonne of volunteers to help us go for a ride.  Hannah has been riding before, but Benjamin hadn’t ever.  These people were fully trained to handle of variety of mobility issues to make horseback riding accessible for all guests.  I write this with tears in my eyes because this is truly a gift to some of these kiddos.  Even kids with Osteogenesis Imperfecta (also called brittle bone disease) had a chance to ride – imagine a child with the bone strength of an eggshell and you will have a better understanding of this condition.  How touching and amazing is that! We have met many wonderful people with O.I. through Ben.

We called our cab to take us to Animal Kingdom.  So far, every experience we had at Disney had been incredibly positive.  However, Animal Kingdom staff were even more gracious to us (if that is possible).  I started the day stopping by customer relations to see if they had a hearing device for shows.  I have to be honest, I don’t even know how these work, but I thought I could find a way to plug the sound right in Ben’s ears, he might hear some things better.  They had never seen a system like ours, so we weren’t really sure.  I felt like I might have been able to get it to work, but I didn’t have a cord with me that I thought I might need.  I told them that it was no big deal…he will be fine.  Anyways, another lady chased us down and asked if she could put a tag on our stroller which would allow us wheelchair access to any rides.  I told her that it was totally ok – Ben could walk just fine, but she insisted just in case he became tired (we would be grateful for this later).

Animal Kingdom is probably the most beautiful of all the theme parks.  It is filled with trees and rain forests that are absolutely breathtaking!  There is beauty everywhere.  Our ride strategy “nothing with a back/neck warning” became problematic at Animal Kingdom.  It seemed that most of the rides here had a back and neck warning, even the tour safaris.   Jesse and I talked and we were sure that he would be fine on a ride like a safari tour.  As we were talking (analyzing risk), we discovered that one of the rides we had been on the previous day ‘Star Tours’ also had a warning that we were unaware of.  We decided to continue to be cautious, but we were willing to try a few rides we felt might be ok.

Our first ride of the day was the Kilamanjaro Safaris.  This was an amazing way to watch animals in a natural environment.  The kids got to see all sorts of amazing animals including giraffes, zebras, lions, elephants, hippopotamus, and more…it was amazing.  I think the neck/back warning might have been because it was bumpy at times, but it was no problem at all for Ben.  We then went through Gorilla Falls, which was also a zoo-like area (that didn’t feel like a zoo-like area) where we walked through a tropical forest and got to see all kinds of birds, fish, hippos, gorillas, etc.  The kids loved it.  After that, we went to the Lion King show, which was AMAZING!!!  It was singing and dancing magic – impossible not to feel exhilarated through it!  Our kids (amongst other kids as well) were invited up to dance and sing with the entertainers at the end.  It was an inspiring and amazing performance.

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After the show, we headed over to their new area ‘Pandora’.  We first went on a 3D ride – Avatar – Flight of Passage.  I was a bit nervous about this one as it had a warning and Ben was barely the right height, but knowing it was a 3D ride made me feel more comfortable.  We first tried him in the seat at the front entrance (as it is a bit restrictive) to see if he would even be comfortable.  After he said he was, we took him to the front to get measured.  I knew he was exactly the height he needed to be, but if they said “no” we would not argue.  He knew this was a possibility.  The first girl who measured him had me help ‘straighten him up’ because his neck is crooked.  He could do it with me helping him, but it was questionable whether that was ok.  She called a supervisor who also measured him.  She told me that he had to do it himself, which he managed to.  Anyways, he did pass the height requirements on his own with barely a mm to spare.  The supervisor called up to the front of the ride to let them know that she would be accountable for the measurement, so we wouldn’t be inconvenienced again.  It turned out to be just fine.  Ben was well supported and it was like riding a motorcycle in the air that kind of went back and forth and up and down.  It was amazing how realistic the ride was for a fantasy ride.  As I am hugely afraid of heights, I often had to shut my eyes and ground myself mentally.  It totally worked.  Ben loved the ride, as did Hannah.  I pretended to know what they were talking about afterwards, but I missed a lot having my eyes shut.  Afterwards we went on the Na’vi River Journey, which was a bit more my style.   It was like a beautiful, calm Pirates of the Caribbean type ride (without the plunge).  This ride did not have a warning on it.

From there we went for lunch to the Rainforest Cafe.  This was technically off Disney property, but the kids enjoyed the rain forest ambiance.  After lunch we went to the ‘It’s Tough to be a Bug” show, which was a fun, interactive 3D movie.  The kids enjoyed it immensely – especially the gross parts.  After that we headed to Asia so Hannah and Dad could go on Expedition Everest, which looked pretty scary to me and Ben.  It was a no-brainer for us that this was not a ride for Ben because it had that roller coaster type force behind it.  Ben and I waited and had a drink.  Afterwards, we all met up and decided (after a bit of discussion and some trepidation) that we would let Ben go on the Kali River Rapids.  This was sort of a river raft raft through the rapids of the Kali River.  I was a bit worried, but it went well.  I took all of Ben’s hearing equipment off and put it in my fanny pack (in a baggie).  He was ok with that.  He loved the ride and we all got wet, but it was fun (and refreshing) for all of us.  We then headed to Dino Land to hang out.  Hannah and Dad wanted to go on the Primeval Whirl, while Ben and I were planning to go on the Triceratop Spin.  Just as Ben and I got to the front of the line up, it started to rain….and by rain I mean firehose pouring down your head rain!!!  It also started to lightning.    We ran under a shelter and waited.  Jesse and Hannah showed up too.  We waited…and waited….and waited…and there was no sign of it letting up.  Everything was shut down.  I think it was almost an hour and a half that we stood there under the shelter shivering.

Finally, it started to let up, but it was still lightning.  We decided to make a break for it.  Ben seemed quite cold and not really himself.  We decided that we wouldn’t go to the Rivers of Light night show, even though we had all been looking forward to it, and headed towards the exit.  We stopped to shop/warm up for a little while.  I was looking for a blanket or something to wrap around Ben.  I was worried that he had caught a chill in the rainstorm.  Anyways, by the time we got out of the shops, it was starting to get nice again.  The night show wasn’t too far away, so we decided maybe we should go for it.  We made our way back towards Asia, grabbed a quick snack then went to the show.  The show was visually stunning, and we were so glad we went!

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Afterwards, we noticed that Ben really wasn’t himself.  It’s easy to tell if he is off because he is such a good-natured little boy all of the time.  He became quiet and withdrawn.  I felt his forehead, and it felt hot to me.  We tried to get out of there as quickly as we could.  I tucked him into the stroller with the new Star Wars blanket we bought to keep him bundled up.  We called our cab and were home by 11:00, but we decided we might need to rethink our plans for the next day.  We were supposed to go to Universal Studios – something everyone was looking forward to.  We decided this:

Plan A – if everybody is up and feeling well, we all go to Universal.

Plan B – if Ben is still asleep in the morning, we will let him sleep in and Jesse and Hannah can go to Universal and do as many crazy rides as they can without us.  Ben and I will come by when he is up and feeling well rested.

Plan C – if Ben is still not feeling well, he and I can stay at the resort and have a quiet day and Hannah and Jesse can go to Universal.

We would see what tomorrow would bring.

Wish Trip Day One

We had a hard time waking the kids the next morning…they were (understandably) a little groggy.  I had to attend an orientation meeting at 9:00, which I did.  I discovered there that they had booked us on a bus to the Magic Kingdom at 10:15 a.m.  I texted Jesse (while in my meeting) to have the kids ready as soon as I was done so we could head out on the bus.  Because we had slept in so much, we didn’t really have time to grab breakfast, so we headed onto the bus and got on our way.  When they booked the resort for us, Rainbow Society asked us whether we would prefer the bus or a rental car.  We decided a bus would work fine for us – it would save us trying to familiarize ourselves with the roads and worrying about where to park.  The bus was late getting out, so we didn’t get to Magic Kingdom until about noon.   We had been given 3 days worth of Disney tickets, a Disney Genie pass (basically front-of-the-line for all rides), and free stroller rentals.

I had my bag with me, which Jesse rolled his eyes at because he said I had too much stuff.  I told him I needed everything I had.  Here’s what was in my bag:  hand sanitizer, wet wipes, sun glasses, ziplock bags (two different sizes), 4 rain jackets, small umbrella, luggage handle, phone charger, bandaids, lip balm (with spf), Ben’s FM/streamer for his hearing aids, 2 bottles of water, Epi-pen, inhaler, pen, sunglasses, eye glasses, lanyards, lens wipes, and a giant Carabiner (one of my most useful items).  I had bought four little rain jackets back home that fit into these tiny little pouches.  I was able to hang the rain jackets and the umbrella off the stroller handle for quick, easy access when the rain hit.  It also allowed me to balance the weight of the stroller a bit as the front is quite light, so our bag would tip it if it became too heavy.  The only thing I didn’t really need were the bandaids (we ended up using some liquid bandaids in the morning for Jesse’s potential blister problem), the luggage handle (I was going to use it to identify the stroller, but they gave us a sign with our name on it) and the lanyards (they gave me one).  I also didn’t bring the glow sticks (which I wanted to be able to hang around the handle of my stroller at night so I could find it easily, but my sister told me I was a frightening person, so I ditched them).  Note on strollers:  yeah….big kids use them there…Ben looks about 5, so he was well within stroller norms at Disney (he’s actually 7…almost 8… but only 44 inches tall.  There were lots of older kids using strollers there.  (I also had on my fanny pack and I LOVED IT!!! – don’t judge the fanny pack people…it is here to help!)

When you arrive at the Magic Kingdom, you can either enter it by ferry or by tram.  We chose the ferry.  I stopped on the way in for an iced coffee (caffeine) and we got the kids a drink and we all shared a doughnut.  We hadn’t really eaten yet, but we thought we could find something more interesting to eat in the park.  At one point in the short ferry ride, you get a beautiful view of the castle, which is just magical and breathtaking.  People on the boat applauded once it came into view.

We had left the Village around 10:40 (the bus was late), but by the time we actually cleared security, took the ferry, and were in the doors at Disney, it was easily 12:15…a little later than we intended to start.  We were all a bit hot in their overwhelming humidity, and the kids were a touch cranky.  We got our stroller rentals (free….thank you Disney) and set off.  I discovered that I had forgotten Ben’s FM system, which irritated me, but we did ok for the day without it.  We first went to the Swiss Family Robinson Tree House.  It was super interesting, and we like to watch the t.v. show at home, so the kids were familiar with the story.  The kids were still a bit sluggish, so Jesse and I decided we needed to pick something a bit more fun to get them settled.  They had no idea what magic was really in store for them today.  We decided to go to the Enchanted Tiki Room, which was funny, cool and interesting…the kids loved it.  After that, we snuck out to Aladdin’s Carpet Ride and Ben loved it….mostly because I acted super scared when we went high (technically I was a little scared – heights are not my thing –  but I knew I could survive a malfunction). He laughed (evilly) as our carpet flew higher and higher.  After, we decided to have some Dole Whip (whipped pineapple ice creamy stuff) after that (breakfast of champions…I know), and the kids loved it.    Hannah had the Pineapple Upside Down Dole Whip (yummm…) and Ben had the Dole Whip Parfait (also yummm…..).  We went to wash up afterwards, and decided to go on the Pirates of the Caribbean ride….awesome!  The kids were now fully invested in the Disney experience.  We wrapped up our Adventureland activities with the Jungle Cruise ride, which was silly and fun.

Afterwards, we moved on to Frontierland.  I should tell you now that we contacted our pediatrician and our surgeon before we left regarding Benjamin and what rides would be safe for him.  We decided to use our discretion, but chose to stay away from rides with a back/neck warning on them.  There were three rides in Magic Kingdom with this warning that I could tell: Splash Mountain, Space Mountain, and Big Thunder Mountain.  We had discussed with Benjamin beforehand that there were some things that Hannah could go on, that he couldn’t.  He’s a reasonable kid, so that was just the way it was.  Hannah and Jesse went on Splash Mountain while Ben and I waited.  We bought Ben one of those Disney Mist sprayers, and that kept him busy the whole time they were gone.  When they returned, we decided that Ben and I would go to Tom Sawyer Island while they went to Big Thunder Mountain.  There was a storm brewing, so Tom Sawyer’s hut was closed.  Ben and I just walked around then watched some of the parade going down the street.  Jesse and Hannah were done and were on the ferry to come to Tom Sawyer island, but I said not to bother as we were heading back.  I was worried about getting stuck there in a storm.  Jesse’s opinion was that Splash Mountain might be ok for Ben, but Big Thunder Mountain definitely wasn’t.  We put that into the back of our minds.  Once we were all together it started raining.  Rain here isn’t timid, sprinkly rain….it’s full-on fire hose rain.  We quickly put on our rain gear and ran to the Haunted House.  There was a lot of lightning happening outside, so it was a good time to get in.  Sometimes I worry that Ben has a lot of metal in his body, so lightning makes me nervous!  (FYI Florida has more lightning strikes/casualties than any other place in North America – I’m not being paranoid….I’m being logical.  The kid’s a walking lightning rod!)  The Haunted House was so fun – it was not a scary ride, but our kids don’t scare easily anyways.  After we got out, we started searching for a Turkey Leg for Jesse.  We had gone to Disneyland 6 years ago (the kids were too little to remember) and Jesse had seen someone eating a turkey leg.  He was never able to find out where the guy got it.  Anyways, he had been thinking about it (obsessed) ever since.  I had an idea where to get one (research), so we looked around and found the place.  I got through the line up to discover that they were sold out, but getting some more within half an hour.  Jesse was a bit mopey, so we tootled around a bit and I went back to see.  Lo and behold – the turkey legs had arrived!  Jesse ate his turkey leg with a hunger and tenderness I have never been privy to.  I believe they may have sold more turkey legs that hour than ever in history – Jesse was a walking advertisement for blissful carnivorous snacks.    (Note:  the turkey leg tasted strangely like ham).

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See man … see man eat meat! (He’s never looked at me that way!)

We left there and wandered back to Main Street.  Our Genie Pass gave us access to a small Wish Lounge.  This was a quiet room with couches and a tv for families to rest up a bit.  They told us we could watch whatever movie the kids wanted.  We said we wouldn’t be long – we just wanted to freshen up and dry off a bit.

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Ben and Hannah in the Wish Lounge

After we dried off a bit, we headed to Fantasyland, which was amazing.  We went on the Peter Pan’s Flight then over to It’s a Small World (which Jesse said was creepy).  After that we headed to a ride that had no back/neck warning on it, which surprised me.   The Seven Dwarfs Mine Train was instantly Ben’s favourite ride of our whole trip!  It was a somewhat interesting/fastish roller coaster ride which went in and out of the mine…he LOVED it!  Afterwards, we went on Dumbo, where the kids rode together and Jesse and I shared an elephant behind them.  We went to go to Barn Stormer, but there was a lot of lightning going on, so it shut done.  We decided to move indoors to Buzz Light Year Space Ranger Spin, which was a super fun video game/ride.  The kids loved it!  (Side note:  I won for accuracy…yep!)  We then split up because Hannah wanted to go on Space Mountain.  I went with Hannah while Jesse and Ben went on America’s Carousel of Progress….a ride/play about changes in technology in the 20th century.  Meanwhile I was having a heart attack on Space Mountain battling my overriding trust issues with heights/roller coasters, etc.  Hannah said it was awesome.  I decided that this was not a ride Benjamin should go on.  I hurt my hands gripping the bar too tightly.  We all met up again to go to the Speedway Racing where both kids got a chance to drive a car.  Jesse went with Ben and I took Hannah.  I had previously thought I might get whiplash from Space Mountain, but that was nothing compared to being a passenger in Hannah’s vehicle.  (note to self:  hire someone to teach Hannah to drive in a car that we don’t own).

After all of this busyness, we decided to head over to our next splurge.  We had bought tickets to the Dessert Party, which would then allow us to view the evenings fireworks in a less crowded, seated area.  We were worried how it was going to be with Ben for the fireworks as he still has difficulty looking up.  We didn’t really know what to expect.  Anyways, we were so happy to sit down and rest.  The treats were amazing!!!  They had chocolate dipped strawberries, homemade s’mores, tonnes of little cakes and such, cheese, crackers, cookies, etc.  They served non-alcoholic champagne, which the kids guzzled…it was a beautiful ending to our night.

And afterwards, the fireworks show!  It was absolutely magical and made you believe in all things good.  It pulled you into this world of beauty and imagination and made our spirits soar.  It reminded us of all the beauty and magic we have seen in our lives over the past few years.  At the end of the show Tinkerbell flew from the top of the castle right over our heads…amazing!

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Imagine a fireworks show that makes you believe anything is possible! (Disney Stock Photo)

After that we left the park, caught our bus and headed home.  Benjamin was asleep before the bus left the park.  We arrived back at the Village around 11:00 with two exhausted kids.  We noticed that the gift fairy had left us a version of Give Kids the World Candyland Edition.  The whole resort is modeled after Candyland.  The kids were excited, but also exhausted.  They immediately went to bed and fell fast asleep.

Back in Montreal…

The last six weeks have flown by.  I was hoping to write more, but with the amount of appointments we have had, transitioning back to full-time school, and daily physio, it has been incredibly busy.  Ben had significant pain in his neck til about six weeks post-op. We think a nerve in his spine was compressed, and the pain at times was overwhelming.  This has now been eliminated and he only gets achy pain and fatigue now, which is much easier to deal with.

Then…back to Montreal again!  We left home Monday, and we returned home (today) in less than 48 hours.  We got to Ronald McDonald house just after 7 pm Monday night.  The highlight of Ben’s trip is staying here and cooking in the big commercial family kitchens.  Last time we didn’t really cook much because we didn’t have much time to get groceries and stuff.  This time, instead of wandering around looking for a grocery store (I got super lost last time in the middle of bone-chilling winter…note to Quebecois…don’t name your Grocery Stores – Metro – after the subway system – it’s super confusing.  So this time, I packed enough groceries (macaroni, beans, pop tarts – all the good stuff according to Ben) in my suitcase to get by…that’s right airport drug dogs…I packed butter.

We were in our appointment for about two minutes yesterday when Ben threw me completely under the bus and told them that I MADE HIM RUN IN THE STORE!!!  I was like….what….I had this weird feeling that he might be right, but I totally couldn’t remember what he was talking about.  Finally I remembered last week when I MADE HIM RUN IN THE STORM – not the store!  When I picked the kids up from school last week, it was crazy windy and raining those sharp, painful drops of rain on our faces.  I ran to the car to keep THE WINDS OF DEATH from blowing my children away.  When I looked back to see who survived, Ben had a mortified look in his eyes…”YOU MADE ME RUN” – he accused.  And I was like…’Oh…yeah – I did ….sorry…I just wanted you to live!’  Anyways, I forgot the incident entirely until Mr. I HAVE NO FAMILY LOYALTY pulled the rug out from under me when I least expected it.  See if I pack Kraft Dinner again.

So, we met with our surgeon, and it was a good news/bad news sort of day.  It seems like there is another surgery in our future, but we will wait at least a year for Ben’s bones to heal up a bit.  It was discouraging, but not at all unexpected.  I’ve been stretching those little bones for six weeks now, so I knew there were issues.  There are a few options for what the surgery will entail, but the gist is that another pizza wedge will be coming out.  Of course if I have my way, there will be a shim going in on the other side, but apparently the human skeleton is not like framing for drywall, so I guess we will see.  The good news is that Ben’s bones should heal faster than a teenagers, so a lot of things on our “we will do in a year” list have been bumped up to the fall (within reason).  For example – he can probably play indoor soccer, but he can’t have a drunken bench brawls.  I think that will be better for him and will leave him feeling less secluded.  Anyways, it was nice seeing all the staff at the hospital.  Ben and I took a taxi last night to the hospital again just to say hi to the night staff too.  It’s amazing how these people feel like family after our little journey together.

We will meet with our team again in six months to check Ben’s progress and see how things are going.

Uncertain Beginnings…..Part B

When Ben was about three or four months old I started to notice a pattern in his breathing while he was sleeping.  It went like this….breathe, breathe, breathe, stop…repeat.   At that point I brought it to his pediatrician’s attention.  “I’m worried about his breathing” I said.  “He keeps stopping, then it seems to restart”.  She did take my worries seriously, but it is a slow process of getting to the right specialist in the right amount of time.  (This is what I find frustrating with our medical system!)  When I initially brought his breathing to her attention in November, I was referred to the ENT (on a rush) for an appointment in January.  The ENT also took our concerns seriously and booked us in for an overnight sleep study (on a rush) in February.  The results from our sleep study were marked URGENT! and were forwarded to our pulmonologist that said our study was highly irregular – he was having about 50 or so events an hour – meaning his oxygen levels decreased significantly.  He then referred us back to our ENT saying that Ben needed a scope to figure out what the heck was going on.  The bronchoscope was booked for April and I was immensely relieved.  We arrived at the hospital on the day of the scope and while we were in the parking lot the hospital called to cancel our appointment state that there were no ICE beds available.  We were rebooked for Monday, May 23rd.  I was pretty upset about the continual delays.  We would never make it to that appointment.

I took the kids to Ben’s music group the morning of Friday, May 20th.  I was a little concerned because Ben seemed to be getting a bit of a cold.  Through the morning I noticed that his congestion was getting worse.  I didn’t know what to do.  I was worried if I told the doctor, his scope for Monday would be cancelled, but I was also worried if I didn’t, he would be at risk when he was under anesthetic.  I decided that I would pop by his doctor’s after music class and let her listen to him.  We finished music and met with his speech therapist for a little while, so we were later than anyone else when we were leaving.  I put Ben in his car seat and was looking for Hannah’s shoes when she said to me (she was three) Mom – you need to look at Ben.  I looked up at him in his seat and I could see that my normally calm child appeared to be sobbing at the top of his lungs, but there was no noise.  I knew something awful was happening.  I pulled him none too gently from his car seat and yelled out “someone call 911 – my baby can’t breathe”.  The receptionist didn’t hesitate and was dialing the second I said 911.  She then yelled upstairs for help.  With the seconds it took for me to glance at him and pull him out of his seat, he was unconscious.  Two ladies came down and began to do CPR on his blue lifeless body.  I remember one of them saying “it won’t go in” as she tried to blow into him.  I was doing a bunch of things during this time….I was talking into his ear saying things like “hang in there Benjamin” – “you’re going to be ok”….”do you hear me?”  I was also trying to contact my husband on my crappy cell phone with no reception =- I would replace it with an iPhone a month later – never to look back.  I was also (this is weird) trying to stack the car seat and find the kids stuff.  I have no idea why that was so important at the time, but in my head I thought that as soon as the ambulance came we would run out and race to the hospital.  The ladies were taking turns trying to blow and also trying to use pain stimulation to get a response from him.  Eventually it was the pumping of his 11 pound chest that allowed air to barely come in.  He was blue and looked awful.  I knew nobody could survive that.  A first responder showed up and cut off his clothes, continuing to monitor the almost invisible rise of his chest.  The ambulance did finally come 400 hours later….ok…it was 9 minutes…but…well you know.  I was ready to football launch him into the vehicle and hit the gas, but apparently that’s not the way these things work.  Anyways, they stabilized him to the point we were able to transport him and we headed to the hospital where he was admitted under an ALTE (Acute Life Threatening Event).  During the first two hours his eyes would flicker around and he wasn’t anywhere I could reach him.  What are the repercussions of this I wondered?  We were admitted and would spend the next month trying to figure out what happened.  What we ultimately discovered was that his trachea (air-throat) was quite soft.  This is why he had so many events when he was sleeping – his trachea would relax and he would desat (his oxygen levels would go down) like crazy.  His innominate artery from his heart was crossing over that trachea and slowly strangling him.  The phlegm from the cold pinched off his trachea that day and caused it to collapse.  We eventually figured it out and we did surgery to take that innominate artery from his heart and sew it into his chest wall.  His MRI came back basically problem free, which was a huge relief!

I should mention a few things here.  We were well taken care of once we were admitted, but I feel that this was an entirely preventable incident.  I think a lot of the problems with our system is that it is just so over utilized and busy that there is no way they can prioritize everyone.  Sometimes I think our healthcare system is similar to the forest fires in Fort McMurray.  It’s impossible to save a house when the town is burning all around you, but it hurts like heck when it’s your house that’s burning down!

I saw this ad today from the main children’s hospital in Toronto and found it touching.  It shows mothers in a new way – not the Superhero strength we are labeled with…and I like that.  What it doesn’t show is the power of the people behind us pushing us through those difficult times.

Earned my gold today!

K…update.  It is 5:30 our time, and I just talked to the surgeon.  Ben should be out of the OR in the next hour or so.  All the tricky stuff is done – they are just wrapping things up.  The surgeon was pleased with how the surgery went.  We were able to do both the osteotomy (cutting out a pizza wedge shape of bone) from the neck as well as two rods down his thoracic spine that should expand as he grows.  I will give more details probably tomorrow.    Thanks so much for all your support, thoughts, and prayers!  🙂

Our Superheroes wear Fezzes

Ya, I know you think I misspelled that, but I didn’t!  The plural of fez (a flat topped hat) is fezzes or fezes.  I thought fezes looked pretty similar to feces, so I opted for the first spelling and “Our Superheroes Wear Feces” is a way different story than I intend to tell at this time (but I’d like to keep my options open).  Anyways, let me back up and let you know how we became involved with the Shriners.  When Ben was young, my friend Kim was a great support to me.  She called me one day and said “did you know that there is a hospital that deals with kids like Benjamin?”  “Ummmmm….no…do you mean the clown guys?” I asked dubiously.  “Yes” she said and then told me how she had run into another girl whose child had similar issues and was a patient at the Shriners.  Hmmmmm…. I quickly consulted with my friend Google, and sure enough it was true! The Shriners have two main specialties – to oversimplify it – bones and burns.  Interestingly, I have sort of known about the Shriners my whole life through my extensive knowledge of the Circus and the Flintstones.  However, I really had no idea what they really did.  So, I called my acquaintance Calum (Addetto Menswear), a Shriner, and asked him about it.  He quickly hooked me up with the Shriners in Edmonton (Al Shamal Shriners).  Our local doctor in Edmonton was quite open with us that he was not comfortable doing the surgery we all suspected that Ben needed as he hadn’t done cervical spine surgery for quite some time, so with a few bumps on the way, the transition was made…and here we are.

The Shriner’s hospital is an industry leader in pediatric orthopedic care.  The hospital itself is essentially a private hospital which receives no funding (that I know of) from the Federal government (and I asked).  They are funded by Shriner’s International and rely heavily on donors and Shrine Temples for support.  The floor I am staying on is dedicated to the 17 Temples that greatly contributed  to the Exceptional Care 4 Kids fundraising campaign, one of which is our own Al Shamal Shriners in Edmonton.  Not only does Shriner’s International  cover all of our health care needs during our hospital stay, which I think will be easily over $1,000,000, our local Edmonton Shriners pays for Ben’s and my flights to and from appointments,  transportation to and from hotel and airport and hospital, meals when we are staying for clinic visits, my meals while I am here, and discounts at hotels for our family visits.  This is essentially the same for all the patients here….and they come from all over Canada, Mexico, South America and beyond!  The idea behind the Shriners is all about people helping other people.  If I walked downstairs right now and asked to go to the grocery store, I’m pretty sure one of the volunteer Shriners would grab the van and gladly bring me there.  That’s how they are.  Every single aspect of our care is so far above and beyond what any person could expect in a hospital.  The hospital we are in now was completed in the fall of 2015. The Shriners raised 130 million to open up its doors.  It has 22 patient rooms (most patients are in and out in a few days), four OR’s and over 29,000 square feet dedicated to research, which is critical when moving forward.  Hmmmm….just a thought here – maybe some of that research can be used to update the Frankenhelmut a bit.  This is the only Shriners Hospital in Canada.

Interesting Facts:

The first Shriners Hospital for Children opened in Canada Feb 18, 1925

First patient – Harvey Jones – I like his name – it’s simple and understated.

Patients that year – 100

Patients 2014 – 17,000 out-patients and 1,000 surgeries

One of the expressions the Shriners have is Shriners can’t put a price on what they do for kids, so they do it for free.  (www.alshamalshriners.org)  When a nurse today was asking Benjamin who his favourite superhero was, I felt my eyes tear up a little to think about all the fezzy (yes, that’s a word) superheroes in our life.  Thank you Shriners!!!

Ben is doing ok today – he has been busy, but he got frustrated easily today, which is not at all like him.  When I pushed him to do his home reading after school, I felt like I might have broke his spirit a bit, so I had to back off for a while.   I had a good talk with an adult patient tonight who had been in halo traction three years ago.  He gave me some good insight on some of the frustrations he felt and some of the challenges he dealt with daily.  I was happy to talk with him.  I feel the pressure about all the school we will be missing, but I also know that  I need to pace myself with my demands on him.  Tomorrow we have school, xrays, and a bandage change.  For Ben, the bandage change is almost equivalent to surgery – he absolutely hates it.  We hope to have it removed tomorrow.

 

 

 

Valentines Day

Today was super awesome!  This morning before anyone was even awake my mom and I dropped off candies and Valentines at everyone’s door.  After breakfast, I went to school, but in the middle of school some people from the Starlight Foundation came in and made cupcakes with us.  The main cooker was a clown named Stretch and he was very tall and funny.  He made a bunch of jokes and told us we could only eat 20 cupcakes each.  Then he gave us a present to keep – a loot bag with a bouncy ball and some candies and notepads and stuff.  He also gave the moms a present from us.  He told the moms that he came by last night while they were sleeping  and took us all shopping, but that wasn’t true. I made mom a Valentine at school and gave her a bookmark.  At school my teacher gave me ANOTHER present!