Category: Mom’s Blog

Wishes and Dreams

Crooked Journey9 Comments

Well….first of all, it has been quite a while since I posted.  This year has been incredibly busy….Ben has been playing ‘catch up’ all year with school, appointments, and life in general.  I also have been playing ‘catch up’ work wise….I started working part-time at the kids’ school in September, which quickly became full time.  Because I only started off the year part-time, I decided to continue teaching night school and doing my best to maintain the books etc. for our company, so needless to say, it has been a busy year for all of us!

Anyways, back to wishes and dreams.  This year we were told that we have an opportunity to have a ‘wish’ through Rainbow Society – an Alberta children’s foundation granting children with complex needs an opportunity to make a ‘wish’.  We were given a list of guidelines and were told to think of at least three wishes that somehow reflected who Benjamin was as a person.  What an amazing thing to be able to do!  At the time, Benjamin was sporting his new neck brace, and we were going for adjustments at least once a month.  Every time we did an adjustment, he was in a significant amount of pain for about three days or so.  On top of this, we were doing private physio two times a week to see if we couldn’t increase his range of motion in his neck a bit.  This was also painful for him, but (as usual) he did it without complaint.  He did however begin to ask for Tylenol quite regularly, which was our only indication that he was in pain.  Anyways, throughout all these appointments, before and after) we would talk and wish, wish and talk.  Doctors, physios, orthotists…whoever….would chime in with ideas.  What a delightful distraction to discomfort!  Finally….we were ready!  Ben had his list and he was ready to go.  We set up our appointment with Rainbow Society….and off we went!  We had decided early on that Ben was running the show for his wish…so I promised to shut up during the interview and just let him do most of the talking (yes…it was difficult).

Ben met with the people and talked…and talked….and talked….his final ‘wish’ list was four items.  The board would meet within the next month or so and designate one of those wishes to him.

His wish list was:

  • ride in an army tank – Ben’s favourite anything is to play army, so that was a natural fit for his wish.
  • vacation to Disney World (there was a vacation selection on the guidelines pamphlet – Ben was eligible to stay at a ‘wish’ village based on previous life threatening events and complicated future procedures.
  • a pet dog – our family dog died while Ben was in Montreal – Ben loves animals, so this was also a good representation of who he is!
  • see how movies were made (Ben has been a HUGE movie buff since he was one year old….the only time he ever fussed was when we went past the theater and didn’t stop in – this kid is going to be the next Spielberg).

As a parent, it was difficult not to manipulate him because I worried that he would later regret his wish in some way.  sidenote:  any child receiving a “wish” from any organization – Make a Wish, Rainbow, etc. – only receives one in their lifetime.  We felt good that his overall list really showed who he was and what he was like.  Anyways, as I said Ben talked and talked during the interview.  And most of what he talked about was having a pet dog.   (I’m not going to lie….I totally didn’t see this coming!)

My supportive conversation with Jesse after the interview:  “Crap….I think we are getting the dog”.  (sidenote:  Rainbow asked us if we were willing to have a dog, which we said yes to).

Anyways, the more I thought about it, the more I thought….well….maybe a dog is the best wish for him….we know he will have more surgeries and procedures until he becomes an adult…maybe having a dog will be a perfect distraction….we could call him Wishes.  So….the month went on and we waited to hear about our wish.  I received a call from our contact at Rainbow saying that the board had decided on our wish…would I like to know….or should we wait for our letter in the mail.   I said I would wait, so we could all hear it together!

And there it was – a letter to both kids (Hannah was thrilled)!

You are going to Disneyworld!!!

The kids were/are beyond excited.  So as we work our way through our home summer school (with all of Ben’s missed school, we really struggle to keep up with our peers) every second conversation we have revolves around our trip.  We need to finish reading Harry Potter!  We should watch Pirates of the Caribbean again!  Where is the Indiana Jones movie?  How tall are you?   How tall are you in those shoes?   You need to eat more vegetables!  Is there a place there where you can buy giant turkey drumsticks and eat them while you walk around (Jesse)?  Can we have ice cream for breakfast there?

We just had our final meeting with Rainbow Society…and I have to tell you…I am a hot mess!  They gave Ben a beautifully packed little suitcase filled with toys and things he might need for the trip.  They also gave us a gorgeous hand-made quilt from a stranger – one we will treasure…they took care of everything (EVERYTHING) for us…itineraries, insurance, tickets, absolutely everything.  We just have to show up.  I was overcome by emotion in the office (and I suspect this won’t be the only time during the trip that this will happen).   When Ben was born, I braced and prepared myself for a myriad of awful things that could happen, but nothing prepared me for the kindness shown by strangers/organizations that has become a beautiful woven part of our lives.

And yes….we are considering getting a dog….

A year ago today…

Ben’s recovery from surgery a year later.

Crooked Journey12 Comments

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!

Ben - new brace
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…

Crooked Journey13 Comments

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!

 

 

 

I Can’t Believe Summer’s OVER!!!

Crooked Journey8 Comments

Wow!  I just can’t believe that summer is over.  I was hoping to do more blogs/updates over the summer, but I guess that didn’t happen.  I will update you now.  We woke up this morning to Ben yelling in the living room “Hey everybody – come here….you have to see this!”  We slowly walked into the living room where Ben was looking out the window.  I looked out and Ben said “look how beautiful the sun is – it’s pink”.  And that is exactly how Ben is.  He is now almost exactly 5 months post-op (on the 27th).  I have to say that I wish his pain had completely diminished, but it hasn’t.  Although he still doesn’t complain, we watch him closely for signs of discomfort, and he does ask me for Tylenol more often than he used to.  We took his discomfort (especially when traveling) into account this summer and stayed very close to home with the exception of going to Calgary once to visit the great-grandparents (and Aunty Karen).

Although our summer was fun and we enjoyed hanging out, it was a lot of work for Ben.  We went to tutoring two or three times every week.  We are still trying to catch up from missing so much school, so it is important that we not let Ben lag over the summer.  I know what you’re thinking…”aren’t you a teacher?”  Ummmm…yeah, but sometimes I get tired of being the pushy guy around here.  Ben enjoys his tutoring, and it’s an opportunity for him to go, get it done, then have fun.  We also do speech therapy once a week, which Ben also loves, but it is a lot of work for him too.  I think his speech is improving quite a bit.  On top of that, we still do physio and a zillion other appointments where we wait forever to see a doctor who spends two minutes with us and tells us to come back in another six months.  Anyways, it’s better this way because I wanted to do as many appointments over the summer as possible, so we don’t miss as much school this year.  We will still have some follow-ups during the school year, but hopefully I can keep it manageable.  We are currently working with our physio to find someone local to do his physio twice a week, which will save us tonnes of time.

Healthwise, Ben continues to get stronger and is eager to run and be active.  We have signed him up for soccer in the fall (with his doctor’s permission and a teensy bit of hesitation) with the promise that he won’t get involved in a bench brawl. We will be playing him at a lower level than his peers, so he will be with smaller players (so even if he does get in a bench brawl, he should come out on top).  I DIDN’T allow him to go back to dance just yet because his neck is a bit of a mess, and I don’t think the stomping will be good for him yet.

So….his neck….  Well – it seems to have gotten worse – even recently.  Although he had limited mobility pre-surgery, his mobility now is quite awful.  His physio and I noticed it getting progressively worse over the summer, and we are working with others to figure out why.  He can’t really look up, which must be so frustrating for him.  I noticed him drinking a can of pop the other day when we were at our friend’s cabin.  It was the bottom third of the can and he literally had to limbo to drink it (which I thought was super impressive considering his back is mostly made up of two titanium rods.  Anyways, we have no idea what is really going on.  The movement to look up generally comes from your cervical spine between C1 and C2.  Ben’s surgery was only done on C6 and lower, so it doesn’t necessarily make sense that it would be affected, but it is.  Our physio thinks it might be a joint pain (not arthritis), but it’s almost impossible to tell.  If that is the case, it is RARE, RARE, RARE that a child would have those problems, so there is no real protocol for treatment, so that is why we are looking for adult treatment (adults have this kind of joint pain), but on kids.  So, this time we need an adult specialist who would be willing to work with Ben.  Once again, we will be charting new territory on that one.  Of course, it could be something entirely different, but it’s hard to say.

After coming home, we had a few other surgery consults, but I think the only one on the near horizon will be his neck.  We are looking at doing two jaw surgeries down the road (I thought it was one when he was 17, but I read in some documents from his surgeon that he plans to do one when he is 11).  As well, Ben’s ears will be restructured over the next few years.  To do this they will pull out a section of rib and reform the cartilage to make an ear.  Ben’s other surgeons tell me I need to hurry and do this before the ear guy retires because he MAKES THE BEST EARS!  (Our life is definitely surreal at times). I’m not sure what the appropriate response is to that.

We are also currently working on building him a new neck brace for him to sleep in (see pics above), so he will go for a fitting for that tomorrow.  The picture above shows Ben getting casted for his new brace….yup….casted.  And….guess who got to get their hands all covered in plaster to help out the orthotist….yup….me!  My resume of medical skills continues to grow.  I totally appreciate that Ben’s team members who know me know that I work best (and shut up best) if they give me something to do…and they’re totally right!

We also have almost mastered his new hearing aids and all the technology that comes with them.  I feel somewhat (heavy on the somewhat) confident enough to train his teacher and EA this year on how they all work together.  Interestingly, they have given me a receiver about the size of a fingernail and told me it was very expensive and to please not lose it.  Sigh…..that sounds like a bit of a recipe for disaster, but we’ll do our best. And… if all goes well with his new hearing aids, they will be mounted to yet more screws in his head (don’t say it – I know what you’re thinking – and you could be right).

Anyways, school is back next week, and the kids are super excited to see their friends again.  Even though there is a tonne of stuff going on with Ben, when he wakes up thinking “this is the best day ever – look at that sunrise – I know that all the peeps in his world have been keeping it a happy, wonderful place for him.  We have a tonne of stuff to do before we go back to school – cleaning, organizing, shopping, etc.   We have some exciting things coming up this year, so check back from time to time and I will send updates!

The reason this is so smooth…my new plaster smoothing skills…you break a leg – call me!  


This little man can cook a pork chop!!!

​​
The weirdest (and funniest) Staycation thing ever!!!

​

Fidget Spinner

Crooked Journey9 Comments

The ironies in life never cease to amaze me.  I sent Ben to school today wearing his brand new top-of-the-line Bone Anchored Hearing Aids (BAHA’s) which are worth about $14,000 and I don’t even have the FM system or the receivers yet.  What he didn’t get to bring to school today was his fidget spinner of which I spent $10 because I was afraid he might lose it.  (Technically – it only cost me $5 because it was on sale 2 for 1, but that’s neither here nor there).  Am I worried about him being mugged with all his equipment or something….ummmm…no…not really.  Who wants a set of fully customized hearing aids?  I think if I just avoid senior homes, he should be safe.  Now fidget spinners…people WANT those!!!

 

Ben got his first set of hearing aids at five months old.  I feel like I have spent more of his life searching for hearing aids than I have spent time feeding him – no, that’s not why he is so skinny – I feed him regularly.  I used to find them in the vents, behind the car seats, under his crib, in the yard, and (once) stuffed into the central vacuum hole in the wall.  It used to drive me crazy.  Having hearing aids at 5 months old is a HUGE pain in the butt!  I mean it’s good for actually hearing and developing language and stuff, but holding a baby with hearing aids is like talking into a microphone that’s set up on top of a huge speaker system at a crappy Bingo Hall….you are going to constantly get feedback.  Ben, of course, was a “more challenging case” because his neck was crooked (and weak) so his ear was directly facing his shoulder all the time.  No matter how carefully I held him, he emitted a constant, steady tone that made me (and everyone else) question whether the CBC was broadcasting an emergency signal or if I had developed an permanent case of Tinnitus.   I am told that this didn’t bother Benjamin in the least because he couldn’t even process that frequency of tone, but it could be a bit bothersome to others.  Ya think???  So, now that he’s older, we have definitely brushed those problems aside (mostly).  No more losing hearing aids (I hope), or minds!  What could possibly be a problem?

Conversation from last week:

Me:  (sitting five feet away from Ben in the car)…Ben…..Ben….Ben…HEY BEN!!!

Ben:  What…I couldn’t hear you.

Me:  What’s the matter? Can’t you hear with your new hearing aids?  Are they not working?

Ben:  I muted you.

Me:  You what?  What!??!?!!

Ben:  I muted you, so I couldn’t hear you any more.

Me:  Wha…how do you do that?  Why???

Ben:  I just push the button in for three seconds and it stops the noise.  You were yelling at Hannah and I didn’t want to listen anymore.  It hurt my ears.

Me:  What!?!??  How do you know this stuff?  And I wasn’t YELLING at Hannah – I was merely pointing out that this was the first day in FOREVER that we got out of the school before 3:00 and now we have to drive all the way back because she forgot her backpack, which seems PRETTY IRRESPONSIBLE TO ME!

Ben:

Me:  Ben….Ben…..Ben…..BEN…..sigh….

So, if you’re wondering what $14,000 worth of hearing aids buys you…it is a headband that makes you look like a cross between Rambo and a flower girl, a cell phone to hang around your neck, two little vibrating pieces…and the power to MUTE YOUR MOTHER ANY TIME YOU WANT...priceless (to some apparently)!

Sigh….

Road to Recovery

Crooked Journey16 Comments

Since being home, we have been pretty busy.  I must admit I am missing my life of hospital leisure a bit when my days were filled with deciding my next meal.  We are working hard on physio with Ben, which can be pretty time consuming.  We are also transitioning him back to school.  He is doing ok, but he can still fatigue quite easily.   I am feeling a bit overwhelmed with the task of catching him up to his peers after missing three months of school.  We were so lucky to have the help and attention that we had at Shriners, but being absent that long has obvious disadvantages.  Our school here is also working hard to accommodate him and help me to get him up to speed.

We continue to have concerns about Ben’s neck, but we are trying to focus on the things we can control rather than the things we can’t, which is easier said than done.  As I’ve said before, Ben has an extremely limited range of motion in his neck post-op and his torticollis (twisted neck) is still significant.   Besides doing his stretches and strength exercises, we have now implemented what we call ‘Mission Possible’, which is a course in the house where Ben has to wear a headlamp on his head and put his feet in the footprint spots on the floor.  He then uses his neck to control where the light shines, and he has to hit all the targets, bulls-eyes and wavy lines.  I think he thinks it is fun, which is half the battle, and we can see some slight improvements in his range of motion, so we’ll see what happens over time.  Ben has also started wearing a cervical collar to bed at night.  This was a bit hard at first, but he seems to have gotten used to it.  This allows us to give him a slow, even stretch while he sleeps, which also allows him to work on strengthening more during the daytime.  Boy – this kid works hard and has such an amazing attitude.  I am one lucky mom!

Ben’s full recovery from surgery will take about a year, with a few of his limitations stretching out to two years, and a couple of minor limitations extending for life. Our biggest areas of focus right now are allowing those bones to heal and fuse properly to the new rods and screws; we also want to prevent accidents like falls.  At recess time at school we take him to a quiet area with one friend to play with.  They usually play an imagination game or something like that – we are currently hatching dragon eggs.  This keeps him out of the ‘combat zone’ of elementary school, while still allowing him to participate in recess and breaks.  I am grateful to our school for providing him with his own supervisor to allow him to do this.  When it gets a bit warmer, he can go exploring a little bit further.

One month post -op

Ben’s main activity that he is allowed to do is walking.  We encourage him to walk as much as he can.  His guide also says he can lift up to 2.5 kgs at one month post-op, but I think this surgery is generally designed for teenagers who typically weigh about 60 – 70 kgs. As Ben only weighs about 14 kgs, we are going to continue restricting what he carries until we get to Montreal to confirm this with his surgeon.  For now, I am only allowing him to lift about a pound or so, which is not much.

Three months post-op

Ben will be allowed to start swimming, bicycling, and doing light jogging at this point.  I am not really sure what we will do about bicycling because we are afraid of Ben falling.  I suspect we will just keep training wheels on his bike for the summer to allow him to practice biking without worrying too much about falling.

Six months post-op

At six months post-op Ben will be allowed to do things like skating (not hockey), roller blading, and maybe some cross-country skiing.  Again, we will need to make accommodations to these activities because Ben needs supports to ensure that he doesn’t fall as his skills in these particular areas are not really developed.  At this point he will also be allowed to try bowling, but for his size we will probably use the smaller balls.

One year post-op

At this point we will be allowed to introduce most of Ben’s regular activities.  He will be allowed to go to Phys. Ed class at school and he can now participate in team sports like SOCCER!!!  Our lives should return to normal, with little restrictions on daily living.  At this point Ben will be allowed to go on amusement rides (within reason), so we are thinking that a trip to Disneyland or somewhere might be in the cards for us next year!  🙂

Two years post-op

Saddle up pardner – we can go horseback riding, but no jumping!  What’s an Alberta boy to do?

Lifetime

Things like football, trampolining, and bungee jumping will not be allowed in Ben’s lifetime, which are easy sacrifices to make.

So, we’ve got a lot of work ahead of us and a few sacrifices to make.  I know that our crooked journey will continue, but we will see what happens.  As for now, our focus is on physio and school, and ensuring that Ben gets lots of rest and healing.

 

 

A Question That Lingers…

Crooked Journey10 Comments

PICU’s (Pediatric Intensive Care Units) are scary places to be at the hospital.  If something goes horribly wrong with your child, it is far more likely to happen while you are in the PICU.  After Ben’s surgery, he was admitted to the PICU at Montreal Children’s.  While we waited for them to finish his surgery, we were told to wait in a place called the Family Room outside the PICU.  This is a place for families to eat or make some coffee or tea.  Sometimes in the middle of the night you will find family members sprawled across chairs catching a few hours sleep here and there.  It was in this family waiting room that I looked up and (once again) said “My God – who are these people”?

At this point I want to mention that I was in a brand new hospital – about two years old.  This room is supposed to be the foundation for parents to regroup and (if possible) relax.  These rooms are usually designed to reflect peace and evoke calm emotions, but these particular walls were decorated with (wait for it)….different  portraits of Colonel Sanders – some normal looking – some technicolor…as if he is a beacon of light saying “it’s ok…you’ve always got chicken”.  



Who in their right mind thought that this was a good idea?  What about fluffy clouds, sand castles, ocean scenes, palm trees, even an ocean storm….or that lighthouse one with all the water crashing into it?  Any of those would have slipped by my mind unnoticed.  I find myself pondering this question more than a person should, but it intrigues me. 

My only question is what committee thought this was a good idea?  What were the conversations like?  Were they emotionally exhausted at the end of a night where they had made 175 decisions and someone just said – “fine – who cares?  Put Colonel Sanders on the walls – you win this one Dennis”.  Or was it a group that thought – “this is an awesome idea – it will remind family members to eat in crisis”.  Were there heated arguments about this?  Did someone say “our healthcare is Finger Licking Good!”? Were these the same people who decided to stock the gift shop with three different flavours of sardines?  … sigh….I just don’t know.

I’m no stranger to bad decorating decisions being thrust upon me.  I remember my father decorating ivy plants all over his living room wall and braiding peacock feathers through it because they ‘looked nice’.  People were terrified!  It looked like carnivorous plants had half digested a peacock.  It was startling!  Brownies fled from our door, tossing their cookies behind them.   

Fast forward to married life and me going to visit my mother when she was ill.  Jesse ‘surprised me’ by putting up a beautiful picture wall in our bedroom that he thought I would enjoy.    I’m not sure what it is, but it confuses me and makes me think that I should never leave home again.  It’s the chaos theory arranged on my wall.  People walk in and go…oh???


Of course my kitchen too has been recently redecorated while I was away too.  Yeah….my country kitchen that overlooks the fields behind us…


So, I guess I’ll never know who decided the Colonol should show his many colors in the Family Room, but it’s interesting to think about!

Ben is doing well.  We are still dealing with hand and neck issues, but we are working hard.  He always works harder than I ask.  I’ll say “can you do 10 head lifts for me” and he does 10 then extra for good luck.  We have another physio appointment in the morning, so I hope they say we’ve been making progress.  I’m still worried about neuro stuff, but we’ll see what we can figure out over the next little while.  Thanks everyone!  It’s nice to be back!