What a year 2018 was!!!

Wow!  I can’t believe another year has flown by.  All in all – it was a fabulous year for us!  Our whole family was healthy this year; we had no hospital stays, and Ben seems to have somewhat caught up from the gaps in his learning from missing so much of  grade one.

Here are some of our year’s highlights!

The Neck Brace – Ben wore his neck brace, but we realized (in August) that it wasn’t necessarily helping him, so we wore it only for preventative measures.  Ben’s surgeon doesn’t want us wearing it, so we have agreed to not wear it til the end of June and determine then if things have gotten worse at that point.

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Name Mentor – Ben’s dentist told him in July that he named his new son Benjamin because he thought Ben was such a neat kid.  Ben is taking his new mentorship pretty seriously.

Wish Trip – 2018! In July/August we had our trip of a lifetime to Disneyworld and Give Kids the World Village – we are so grateful for that experience.  I actually even did up a scrapbook to record our memories!  Now I just have to work on the kids baby books ;).

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One of a kind hats!  Aunt Betty and Uncle Don sewed Benjamin two customized winter hats, so his ears won’t get cold when he is outside…Thank you!!!  How awesome is that!!!

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I get a contract teaching pre-k full time for a year.  This is such an amazing full circle for me because I can take all of Ben’s early intervention experiences and the amazing people who worked with us and use that knowledge to pay it forward by really investing myself into my students and doing everything I can to help these fun, crazy, amazing little kiddos create early success in life).  I am overwhelmed by all the interesting things I am learning this year! Teacher hint to parents:  let your kids PLAY (physically) every day – so important for social, emotional, and physical development!

Ben has an amazing support team in school again this year!  We are so grateful for the kindness and compassion of our teachers, administration, and EA’s.  We are so luck to get all the help we get navigating our journey!!!

Loving the fall…video below – this is Ben a year and a half post surgery.  After Ben had his spine surgery, I had no idea what to expect.  I thought all movement would be tight and rigid.  This kiddo doesn’t let anything stop him.  I showed this video to Ben’s surgeon.  He had a minor heart attack, but couldn’t help but laugh!

In October Ben and I went to Montreal again to see our friends and clinic team.  We are told that Ben will require another surgery (which we knew) and we will wait a year or two until he gets bigger for that to happen.    The straightness of his back is still awesome, but his neck that is the problem (a pain in the neck really…haha!).  We cannot fix the actual problem where it is (around the C1-C2 area because the risks associated with this are not even comprehensible).  Instead, we will try another osteotomy (cutting out bone) lower down the spine C6-C7ish (what’s left of it) to help Ben appear more level headed (ha ha…I’m totally going to tell him that one day), but it will never be perfect…who is though?  The doctor also insisted that we stop using Ben’s brace because he wants him to just have fun and enjoy life.  He says not to use it for preventative measures, and that he will fix any problems that come up.  Our orthotist in Edmonton is willing to let us try that out (often when you please one doctor, you are not pleasing another…this is a tricky part to navigating our journey).

Ummmm….here’s some crazy awesomeness that happened in October – Remember when we were at Give Kids the World and I said a lady asked us to fill out a form for Ben to get his own song….well that happened!!!  And he LOVES it!!!  Oh my GOODNESS!!!  We all LOVE IT!!!  This was the most special thing in  the world.  I’ve been trying to update this blog post FOREVER to tell you about it, but I haven’t had a minute…I hope you enjoy this.  Carl Alloco…you have some pretty big fans in this house…you too John Beltzer!   We played this song for Ben’s classmates and they loved it!  I have to admit I find myself humming it every once in a while!

 

Ben’s Song Lyrics

This is a video of us playing it to Ben for the first time!  At first it is hard for him to understand the words.  I had the joy of sharing this video with the song-writer Carl Alloco and John Beltzer (the founder of Songs of Love) – amazing human beings.  Excuse the house – it’s a mess!!!  Chaos reigns!

 

Audiology – Jesse, Ben and I have a surgical consult regarding Ben’s ears.  There are two potential surgeries at hand there.   The first one is to implant his BAHA’s (bone anchored hearing aids) into his skull.   This requires putting two screws into his skull and cutting patches of skin and thinning it out (so hair won’t grow) behind the ear.  (I remind Ben that he seems to really thrive with screws in his body, which he heartily agrees with…does that seem screwed up…haha…killing it!!!).  This is a day surgery, so it should be simple in nature.  This surgery seems like a bit of a no-brainer to me if Ben is using the hearing aids anyways, but we want to confirm a few things on our next hearing test before giving the go-ahead.  There are two positives to come from it…Ben will be able to stop wearing his headband and he should get improved hearing because we will be anchored in directly to the screw on his head.  The second surgery discussed was a reconstruction of his right ear and a minor reconstruction of his left ear.  To do this, they will have to pull out a piece of Ben’s rib and carve an ear out of it (Ben thought they were going to take one of our ears and transplant it from our head to his – which we would totally do if we could – mine of course –  Jesse’s are ridiculously large and meaty).  It is generally a two part surgery with the first part taking a full day.  The second part would take place over a year later and could be optional as the success rates are questionable.  Ben is not big enough yet for this surgery as his chest measurement is 52 cm and he will need to be 60 cm or more in order for us to proceed. Jesse and I are not sure about this one.  I like the idea or his ears being even as it will help with wearing glasses later in life (which was a huge adventure when he was wearing glasses a few years ago), so we will see how it goes.   There are a few other options for this as well, but the rib one seems the best so far.

And I think that is it for us.  It was a good year…we’ll see how 2019 shapes up.  Ben is happy and healthy.  He does get pain from time to time, but it is manageable and he is pretty tough about it (unlike his father who wants to be hospitalized – I wish – for the common cold.  Thanks to everyone for their kind words and thoughts this year.  We look forward to updating you in the future!

 

A year ago today…

Ben’s recovery from surgery a year later.

Well it was exactly one year ago today that Benjamin had his first spinal surgery (installation of the halo and placement of two anchors on his lower spine).  I remember lying awake at the Ronald McDonald House the night before the surgery wondering if I would ever be able to snuggle with him again or if he would be all rigid and rod-like.  Well…I am happy to say we are still snuggling (note to new patients – you will definitely NOT be able to snuggle during traction time).  Ben is learning to skate again (thanks to his teachers who were supervising him and had a few heart attacks along the way!)  He is also playing indoor soccer and dancing…well…sort of…  Anyways, here we are a year later and here’s what’s happening in our life.

  1.  Ben has fully recovered from his surgery.  As mentioned before, we will probably have to go back in to do another osteotomy, but for now he is doing great.  He only scored one soccer goal before surgery, and he has now scored two, so there are obvious benefits to the surgery.
  2. In August he started wearing a new Torture Device shoulder harness/neck brace.  Our intent was to straighten his cervical spine as much as we could in hopes that it would a) minimize his head tilt  b)improve the way his bones grow and c)give a straighten spine for the surgeon to operate on in the future.  We also began aggressive physio too at this time to try to compensate for loss in his range of motion in his neck.
  3. In December we stopped because it appeared that his body was compensating so much that we were screwing up his shoulders.  (Imagine shrugging then dropping one shoulder…that was pretty much what it was starting to look like…so, we retreated, regrouped, and replanned.
  4. In January we came up with a New and Improved Torture Device neck/head brace that goes all the way down to his waist and doesn’t allow his body to compensate.  It was very painful for him initially, but we weaned him in a few hours a day with LOTS of Tylenol when needed.  He can now wear it for up to 20 hours a day.
  5. In January we also STOPPED physio….stopped you say.  Yes, we stopped because the orthotist wanted us to wear the brace as much as possible, and the physiotherapist wanted us to have as much range of motion as possible.  The two sides were counter-productive.  So, we decided to put off the physio while we are working on the bracing.  I think we are starting to see some progress!
  6. We got the “go ahead” to implant his new BAHA hearing aids.  We are going to wait for a while though because I want to be pretty darn sure his hearing is consistent in them.  He has a history of inconsistency, so I think we can wait for a few more tests.
  7. We received a “WISH” from the Rainbow Society of Alberta, so we are excitedly getting ready for that and filling out forms and such.  I can hardly wait to tell you more!  The kids were OFF THEIR ROCKERS when they found out!  I will definitely write more about this!

Anyways, that’s what has been going on this last little while.  Ben is still loving life and is as awesome as ever!

Ummm…yeah….pretty recovered!

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Ben getting fitted for his new torture device brace
List on drawer at Glenrose A sign I noticed on the drawer in the casting room while Ben was being fit for his new brace… can you see why I thought it was weird?

Back in Montreal…

Ben and I just got back from a super quick trip to Montreal.  We left early Thursday morning, and we were back late Friday night.  It was a busy trip, but we did get a few opportunities to play tourist, which was awesome!  We got in after dinner on Thursday and had dinner with a friend.  Ben finally had an opportunity to have some poutine, which he thoroughly enjoyed.

We woke up on Friday and I called the hospital to tell them not to send a driver to pick us up.  I wanted Ben to have a chance to see the Metro (their underground train), so we walked down there.  We both enjoyed playing tourist a bit and headed over to the hospital.  When we were there, we thoroughly enjoyed seeing all our old friends.  It was wonderful that Ben was feeling so much better this time – we could visit everyone.  We visited our nurse friends and Ben’s new(ish) neck brace was immediately stickered up.  Because it was Friday (MOVIE DAY!!!) we were invited back to watch the movie and have some popcorn after our appointment.

Our appointment went ok.  There were no real surprises, but Ben’s surgeon did notice that he seemed to have a lot less mobility in his neck now than before surgery.  I have been seeing that too.  It appears that this is happening deep at his joint level…not sure why.  We will do what we can to loosen it up a bit, but a lot of this might be irreversible, which is a bit disheartening.   Ben did point out that he had scored a goal in soccer before surgery and another one after surgery, so everything seemed to be working ok.  We all laughed.  Ben said he felt straighter, but we all know that there are significant problems still.  Ben will require another surgery in a year or two to “level his head”.  I refrained from uttering a few “level-headed kid” jokes, which showed great restraint on my part.  So, for now we watch and wait.  This will give me some time to try to find some bio-med engineers willing to build me a vertebrae block with triple action shock absorbers….I’ve been watching Robo Cop spin-off’s and I have some awesome ideas!!!  So, for now we will continue to work with Ben on his physio – we do private physio now, and we are very  happy with our physiotherapist.  Ben is also wearing his neckbrace up to 20 hours a day without complaint, which is amazing. He seriously never complains. Half of the time his forehead is bruised, and we are always trying to switch things up so his skin doesn’t chafe.

After our appointment, Benjamin went upstairs to watch some of the movie and eat his popcorn.  It was a nice end to our day, then we raced away to the airport.  We got in last night (this morning) at about 1:30, so we are both pretty tired today.  All in all, it was a good trip.  Ben’s really been practicing his “bonjour” skills.

Anyways, on a more exciting note….there is a movie that was just released yesterday about a child with Goldenhar syndrome, which is Ben’s syndrome – but the boy in the movie also has a genetic mutation which they refer to as “lightning striking twice” in the book.  Anyways, I am excited/terrified to see.  It is called “Wonder” and is starring Julia Roberts and Owen Wilson.  I read the book this summer, so I am looking forward to seeing it, but I know it will be an emotional journey for me. I had to put the book in the freezer a few times, but I got through it.  I wanted to see the movie at the VIP theatre, so I could grab a wine (or two), but it’s not playing there.  #ChooseKind  Here’s the trailer.  Wonder Trailer

I have more updates coming up soon…lots of exciting things happening at our end, so keep checking!

 

 

 

Uncertain Beginnings Part A 

When Ben was born, it took us about 4 days (I think) to get diagnosed with Goldenhar spectrum or syndrome (depending who you are talking to).  At the time, I didn’t really know what that meant, I only knew that it affected his eye, his ears, and his spine.  We were transferred to our local hospital for this diagnoses and each specialty came in and did a consult.  I would eventually gather all these consults and study them beginning my journey into understanding the medical world.  I didn’t study them to argue with my doctors, but more to learn the language and be prepared with what to ask.  It’s an intimidating world to maneuver and learn.  I used to study before each specialist appointment to try to understand what they were looking for – I studied audiograms, eye prescriptions, xrays, ct’s, bloodwork, and doctor’s notes – all searching for proof that everything was going to be ok.

My first “crash” was when Ben was about 4 months old.  We were to have an ABR (auditory brainstem response) test to help us determine Ben’s hearing loss.  This is a test where they put the patient to sleep through anesthetics and run sounds in his ears while monitoring brainwaves to determine what he is actually hearing.  It is generally quite accurate.  I had done my homework and I was ready!  There are two types of hearing loss you can have:  conductive or sensorineural.  Conductive is more like sticking your fingers in your ears.  The quality of the sound is the same, but it can be really muffled/muted.  Generally hearing aids work well with this type of loss.  Sensorineural loss is when some of those millions of hairs in your inner ear (cochlea) are damaged or missing.  We have no way of determining sound quality, and clarity of sound can sometimes be difficult even when aided.  Anyways, I was ready for this test.  I studied Ben’s diagnoses – I looked at his previous hearing charts – I read specialist notes, I read CT’s and I knew knew knew that his results would come back as a conductive loss.  I was prepared and able to deal with that.  Because we had to be sedated for the test, I was waiting in day surgery with him while he recovered.  The audiologist came in and presented me with the news…it was a sensorineural loss on both sides.  Cue nervous breakdown #1.  In hindsight I’m not why that should be the news that pushed me over the edge, but it was; it did.  I also believe that the audiologist might not have been prepared for my emotional response, but I feel like they handled it pretty well.  My sobs shattered the recovery room and I kept saying over and over “why can he just catch a break”.  They managed to calm me down, saying all the right things.  Afterwards I sent a three page letter to the audiologist apologizing for my tears and also including my documented research as to why I still thought it was conductive (sometimes I just can’t stop myself).  Even today  I wonder why nobody’s filed a restraining order yet!

I remember after Jesse and I received the initial diagnoses we thought – well that is that.  At least now we know what to expect and I was able to slot our little problem areas into nice tidy compartments…ENT….opthamology….neuro….spine….etc.  We were confident that we knew what to expect and we would be able to find ways to deal with each issue.  Little did we know at that time that Ben would come very close to dying in less than 6 months.

Oh…I should mention here that five and a half years after Ben’s first sedated ABR, and a million tests later his audiologists have come to the conclusion that Ben has conductive hearing loss in both ears, so we are quite pleased with that (I say tentatively in case it should change).   On that note – I have a favour to ask, which I am happy to pay for.  Ben will be receiving new hearing aids called BAHA (bone anchored hearing aids).  Normally these are anchored onto the head through a screw, but we want to wait a bit for that to happen (we’ve totally surpassed our head screw allotment for this year…maybe we’ll try again in 2018).  So, the hearing aids that we are getting are attached to a headband.  We have done a trial of these and Ben really does not like the headband at all as he finds it quite uncomfortable.  I thought that we could find a way to incorporate the headband into a boys baseball cap and cut out holes in near the ears to allow the BAHAs to access the bone.  I know that I impressed the heck out of everyone with my beanbag surgery, but I feel like this type of seamstressory (yes, it’s a word) is beyond my capabilities.  If anyone knows of anyone who I can contact to help me with this project, I would be super happy.

Ben seems to be doing well.  He is strong and continues to move forward.  Tomorrow we will be doing X-rays again.  
 

 

The Gift of School

School in the hospital has three major benefits: it gives the patients a regular routine which helps to pass the days; it helps distract from the aches and pains of everyday hospital life, and it provides a critical and necessary opportunity to help the students keep up with their studies back home.  It also pulls the students out of their rooms and places them in a social atmosphere.  While we are staying at the Shriners Hospital, Benjamin is expected to go to school 5 days a week.  He goes from 9:00 – 11:00 every day when he breaks for lunch and returns from 1:00 – 2:45.  He is expected to be dressed  normally for school; he cannot come in pajamas because he is not sick.  His teachers do keep a very close eye on him to ensure that he is not feeling pain or other distractions that might interfere with his learning.  Going to school actually makes for an incredibly busy day for him.

There are two teachers in Ben’s school – one teaches English and the other French.  Ben’s teachers back in Alberta have done an amazing job in providing us with assignments and projects for Ben to work on over the next few months.  We hope this will help him keep somewhat caught up with his class back home.  His teacher here is equally helpful in ensuring that Benjamin works to the best of his ability.   These teachers here take accommodation to the next level.  They are constantly interrupted by doctors, nurses, OTs, PTs, etc.  Students can be whisked away at a moments notice.  Our teachers call in specialists when needed – this morning they were calling OT when I left because they didn’t like how Ben was sitting in his wheelchair.  They deal with aches and pains while teaching spelling and math.  They are an intrinsic part of our healthcare team.

Currently there are only three students at the school, and one of those is only there for mornings.  Of course this changes weekly, but school is only offered to the long-term patients, so there are not that many students.  In the playroom next door, Child Life also offers an early education program in both French and English for patients who are not yet in Grade one.

Oh….I forgot to mention…there is no school on Friday afternoons EVER!  That is our popcorn and movie afternoon to celebrate the week.

I like to move it move it…

They made me a walker here.  It’s pretty big, but I can push it all by myself.  Everybody laughs and says they can’t believe how good I am at walking.  That’s funny because I used to always walk.  Sometimes I get stuck in doors or go into walls, but someone always helps me unstick.  They like when I walk, but they don’t really want me to run because I could hurt myself.  I love sitting in my wheelchair too.  Today they took off my bandage and now I don’t have to wear it anymore.​  My school sent me some valentines, so I got to open those after school. That was awesome; it really filled my bucket.  Me and my friend Rodrigo are going to eat supper together tonight.  He is a grown up, but he’s the same size as me.  He’s very nice.  

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.