Tuesday, 30 July 2013

Short and Sweet

Beach Bum
I just wanted to put up a quick note and apology for the lack of posts during our trip out West.  For those of you that aren't a part of our Facebook Family (The Unique Life of Mr.B, please 'like' the page to get the updates and the awesome videos) then you wouldn't know that we've (Mr.B) had a bit of a rough week.  He's feeling mostly better now but has been experiencing some repeat gut issues (severe cramping and possible partial blockage).

I had the greatest of plans to do a post each evening and add lots of picture for those of you along for the ride for us.  Sadly that didn't come to fruition as Mr.B was and always is my first priority and we spent several nights watching and waiting to see if he needed to be seen or not (and changing our itinerary accordingly). 

A HUGE thank you to Mr.B's Pediatrician, (who is on holiday herself right now FYI), for working through the issues with me and offering her support, guidance and a back-up plan when we needed one...simply amazing.

I will have LOTS to say and LOTS of pictures coming up but it may not be till we are home safe and sound in Calgary later this week.  It has been in incredibly stressful trip but also the most relaxing in so many regards as well (yes, I can be stressed and relaxed at the same time, promise).

We've had so many wonderful visits (although not as many as I'd planned in my head before coming of course) but we did see so many family members and created some lasting memories for all of us.

Mr.B is exhausted but happy and is still loving and living to the fullest each and every day!

Thank you for checking in on us, the hope is for a great loooong post by the weekend (fingers crossed)!

From Our Home (My Sis's Home, Chilliwack BC) To Yours...

Tuesday, 23 July 2013

Our Piece of Heaven

My 5 am view of the Pacific!
For those of you that follow us on Facebook you'd know that we are now safe and sound in Parksville, BC!  We are on the East Coast of Vancouver Island (West Coast of Canada for you international folks!) staying at a friend's condo right on the beach.  There is so much to say about our trip but I'm going to try to keep it short(ish).

The hilarious (blurry)shot my Mom took of the start
of the voyage!
We'd (I) planned to try to leave in the early morning but I knew Thursday that wouldn't happen.  The thing that I have to keep telling myself this trip is that there is no itinery, we are under no pressure to be anywhere at any specific time (I have tried to plan it that way).  The thing I didn't count on (and silly me for it) was that I'd have two very excited little boys to try to pack the van around!  In the past when we've travelled (I have done the trip out West with the big boys more than once) they wouldn't be told until the minute we were leaving.  I would go in at 5am and wake them up and announce we were leaving!  Not so this time, they knew when they got up Friday morning but I still had hours of work to get us on the road.  We did finally get away at 3pm and we were off!  Braeden was SO excited!  It was like he knew we were on an adventure!  He was singing away in his seat and would suddenly break out into gales of laughter as he watched the world go by.  I was somewhat hesitant to what kind of traveler he'd be (he's not used to sitting) but he just blew me away at how happy he was to just be.

First extra-long pit stop!
We had a few hiccups along the way to slow us down but we got as far as Revelstoke and hunkered down for the night.  Mr.B is not a car sleeper (none of my kids are) and he was more than a little tired so we decided not to push our luck.  Torin was more than a little upset with me that I wouldn't spend the extra hundred dollars for one night to stay in the hotel with an elevator but we did all survive.

First time 'sleeping' in a playpen
It was a slow morning as Mr.B had had a bit of a rough night (nothing new), although his response to 'sleeping' in a playpen for the first time was pretty noncommittal.  My Mom (who flew in from Victoria to be my co-pilot for the trip) and I were chatting and decided that we would see if my Aunt and Uncle in Adams Lake were home and willing to let us drop in (mostly) unannounced for a visit.  We got the okay, directions and we veered off our first course on a new adventure.  My Aunt gave us perfect directions but it was still surprising to realized that we literally had to climb a mountain and come back down it again (on a logging road) to get to Adams Lake from where we were.  I was so happy that I had decided to detour, aside from seeing my great Family of course, we (the boys and I) got to see their sweet piece of paradise.  I think Rylan is thinking that the farm life might just be for him!  My Aunt even got some new ways to bolus feed her babies (cows and goats) when they need to be tube fed...who knew g-tube supplies could be so universal?

My Aunt and Uncle's gorgeous land and farm!
The boys got to go visit the cows, gather eggs from the chickens, pet goats AND walk through the creek (and fall in).  It was a hot day and Mr.B did settle into a short nap (thankfully) but was quite beside himself when he woke up.  Now for those of you that know B well you know he doesn't cry so the fact that he was past crying to inconsolable at points was more than a little disconcerting.  I finally realized that he was probably dehydrated (although I'd been supplementing with Pedialyte and running his feeds non-stop).  I gave him a large bolus of Pedialyte and got him back into the A/C of the van and he settled right down.  I do have to admit I had a slight moment of panic when he was so upset that I thought, "oh crap, we are in the middle of nowhere and now something has gone wrong...".  I knew that I didn't have cell reception but when I took a moment to think I realized that we did of course have a home phone and in the worst case scenario they would have to chopper him out.   (These are the days of my life...)


Picking fresh cherries...
Oops, sour one! (and he fell in the creek)

We did finally make it into my Sister's place in Chilliwack that night but it was midnight (again) before the kids got to bed. 

Aunty Mobee love! 
(She has the nerve to visit Australia while
we're at her house!)
From Chilliwack we carried onto North Vancouver to pick up Pappa for the trip to the Island but not before dropping my Mom off to carry on her way to Victoria.  I know I've said it before but I love Vancouver, I feel like it is my city (although Alberta is certainly home now) and it was such a sense of happiness and joy to drive back into town.  So much has changed in two short years but it still feels like it's wonderfully crazy self at the same time.  Our visit in Vancouver was pretty short-lived however because we had a ferry reservation to catch to get the boat over to Nanaimo (and onto Parksville).

Grandma Love
My Father-in-law took up the position of my co-pilot and my Mother-in-law loves us so much that she not only followed us down to the ferry but road the hour and a half across to Nanaimo with us before having to turn around and head back to Vancouver (she has to work this week).

Off the boat, picked up the keys in my old stomping ground of Lantzville (where I grew up) from my Friend's Mom and onto Parksville and the Ocean (although we had certainly just crossed the Ocean water to get to the Island!). 

We had another late night so there was no 'beach' to be seen but we did arrive and gaze in wonder at our new 'home' for the week!  My wonderful Friend Lorna (who I grew up with but now also lives in Calgary) owns our temporary 'home' and she (so graciously) agreed to let the boys and I stay here for the week.  I can't say enough about how beautiful of a spot this is!  Her Condo looks out over a spot of Parksville beach and with the windows open it is pure heaven.  We are a two minute stroll from the Ocean (when the tide is up) and have enough beds for all so that it really feels like a 'holiday' of sorts. 

Mr.B (unfortunately) had yet another rough night last night where he did his waking every 10-15 mins for 5 hours straight.  If I wasn't exhausted already...I did try to 'shock' him out of the cycle after a few hours but it only worked for 20 mins before the cycle started again.  We have no idea what is causing this sleep disruption but it is brutal from both of our ends.  He finally settled into a deeper sleep at 6:30 am which was just in time for me to get up with the other two (overexcited-to-be-at-the-beach) boys!  The killer?  Mr.B then slept for SIX HOURS STRAIGHT, right through till 12:30 pm!  What a Turkey!

Thankfully Wade, my Father-in-law took the big boys down to the beach for a 'short' walk (which lasted 3 1/2 hrs) so that I could take B for groceries when he woke.  B (the Turkey) had woken only shortly before they came back so I had three hungry boys to feed.  The boys got one look at the Ocean on their walk and dove right in!  Torin is now (frightfully for me) fearless in the water and there was no way he wasn't going for an immediate swim.  It was also one of the lowest tides of the year today so they had a huge hike before they could even get to the water!  I am so glad that my children embrace the Ocean as I do and feel such a love for it as well.

Beach Bum!
After a lunch and a run for groceries we were finally able to take B down to the water.  The big boys were begging to go back in for a swim (especially since the tide was in and it was so much closer) so we all trouped down.  Wade and I had thought we would walk a way down the boardwalk but the boys were having none of that and just went and dove back in!  Braeden saw the Ocean and was a little hesitant at the sound and movement combined but was certainly intrigued.  I wasn't sure what his reaction was going to be, if he'd scream and kick up a fuss or not since he was unsure.  I asked Wade to do the honours so that I could capture it and what happened was pure magic.  Once B's feet went into that water he was off and running (literally in the air, running).  He LOVED it!  I have trouble posting videos on here so if you'd like to share in the experience, click here and it will take you to the video on our Facebook page (feel free to 'like' the page while you are there so that you get to see other videos too!).

I spent the next half hour trying to stop B from vaulting from my arms because he just wanted down to explore!  I wanted to let him down but my main concern was that he could get sand around his actual g-tube port (hole through to his stomach).  I'm going to hopefully track down a water-proof bandage tomorrow of some sort so that he can just go down and have a go at the beach.  I feel such a sense of relief and happiness (and ironically some sadness as well) that we've accomplished this task of putting his toes in the Ocean.  I'm happy I've done it and took on the task of getting us here but sad that for one Michael isn't with us (he had to stay for work) and truly feeling a sense of loss of sorts that I even have to feel such a 'need' to do things for B. 

This is a trip that memories will certainly be built on and for that I am so very thankful.  It is cathartic to me in so many ways to be here.  I feel like the Ocean is healing a part of me, the part that's spent the last 20 months silently grieving while the rest of me has pushed forward and persevered.  I don't often discuss my sense of loss through all of this, not that I don't know it is there but if I acknowledge it then it makes me feel like I'm less thankful or grateful in a way for what I do have.  I know it is natural to grieve for what could be but so much of my life has had to be Here and Now for the past two years and that is how I've chosen to live it.  I've said before that I wouldn't change it, these are my stars and my path in life, but it doesn't mean that every once in a blue moon I take the time to wonder what life could have looked like in other scenarios (good and bad ones).  I don't know how many more times Mr.B will get to 'swim' in the Ocean but what I do know is that next years trip will already be in the making as we head home next week. 

From Our (Transplanted) Home To Yours...

Tuesday, 16 July 2013

Sunshine On My Shoulders

Stampede'd and Cowboy'd out!

Isn't it ironic that less than 24 hrs after my last post Mr.B spiked a fever and I've been fighting a chest cold?  Ah Murphy, how you mess with me and my life!

The 'good' news is that neither of us is getting any worse and I could complain about the timing but what's the point?  There really is never a good time to get sick.  Medigas (our O2 provider) was by today to do a system check and an oxsymmetry test on B, which he passed with flying colours.  We've got our overnight oxsymmetry test tomorrow night and our follow up on Wednesday to determine if B's doing well on 'room air' 24/7.   As I've already said before, he is doing so well off his O2 and is so much stronger!

I got a call from B's Pediatrician today checking in with us and she reiterated the fact that she is fully supportive and wants us to go on our trip.  She told me (again) she wants me to live my life and that if something were to happen to Mr.B on the trip that 1) It's not my fault and 2) It would have happened, trip or not.  She is right of course but it is also so great to hear!  She also let me know that she'd been in direct contact with our FSCD worker and that they were on the 'same page' about me needing more assistance.  We'll see what happens with that...

We've been getting out and about in this sunshine!  Friday for Ashley's last day with us (don't even get me started on how much she'll be missed) we went with Heidi to the Stampede.  It was B's first Stampede and this kid did not want to miss any of it!  He loves, no LOVES being outside and loves being surrounded by people!  Mr.B was simply in his glory and I was fretting non-stop because he wouldn't keep his hat on his head or a blanket to cover him or his sunglasses on...he simply just enjoys life too much to live it covered up.  I'm sure if he could he would tell me more often than not, "Mom, relax".  He did have some pretty serious sun screen on and thankfully didn't get any colour on his alabaster skin.  I'm sure Ashley was internally rolling her eyes when I kept asking her if she covered him enough..."What about the bottom of his feet?  The bottom!"...would I have thought to sunscreen the bottom?  I don't know if I would have but Ashley did.
Torin's first ever face paint!  My Robot-boys!

Here is how our Stampede experience goes (pretty much the same routine year to year):

The big boys have a 'free' day to rule, they are allowed to eat whatever they chose (within reason, there's no reason I should have to deal with a puking kid) and see what they want to see

* Free Ice cream from the TD booth (good on em considering the horrible press they've had lately)
* Mini Donuts (ooooh, coated in cinnamon sugar, you know the ones?  Still warm...mmmm too bad they give me a stomachache!)
* Pizza for Ry and Chicken Strips and French Fries for T
And last but never least,
* Cotton Candy

All of this plus rides on the kids midway
and maybe a show (we didn't catch one this year) and all the sightseeing they desire.  All in all, it is a good day but an exhausting one!  Mr.B made it almost all the way through but finally had to give in for the last 1/2 hour and sleep (the poor duck!).  It was certainly a great way to end our time with Ashley as she's never really 'done' Stampede before.

A whole lotta love!

We also had another successful Blood Drive this weekend!  Yet again I was disappointed that my iron was too low and yet again the Nurses stressed to me that I need to get more sleep.  We did have most of our regular donors come out and roll em up though and it just gives me such joy to be there and to be a part of it.  The Blood Clinic staff all love B (big surprise) and they always tell me that they love our Drive days and seeing us.  We always welcome new donors or old donors that haven't been going regularly...we'll take anyone that can bleed, has the want to save lives and is just their awesome selves!

We had a quiet family day Sunday, we are finding ourselves needing these days to just 'be'.  I took Torin out for some Mommy time in the afternoon and you'll never guess what we did...we visited elevators, yup!  I had to do some things at one of the Malls and knew he'd be in heaven so off we went.  All seven elevators at Market Mall? Check!  Finally a long awaited ride in Target's double elevator (it was broken last visit)? Check!  All of the phones (and I mean ALL) in Best Buy looked at, talked about and checked over? Check!  What a happy and relaxed boy I had at the end of our time together, I just wish I had the time and energy to do it more frequently with him (and that I had taken my camera, damn).

The weather was a little sketchy today so we opted for an indoor day instead with Heidi so we headed downtown to the Glenbow Museum.  The working classroom for kids was set up with Spyrographs today so
the boys enjoyed creating some of those.  I have to admit (don't tell my oldest sister who is a history major and works for the Royal BC Museum) that I'm not a huge fan of museums...don't get me wrong, I love the exhibits and what they offer but I just find that they sap me of energy.  Heidi feels the same way but tells me it is 'soothing and relaxing' to her...I just feel drained.  The boys did certainly enjoy themselves, T loved the elevators (he's been there before) and knew where the one ceiling fan lives while Rylan tried to take it all in but loved the Mineral exhibit.  Both boys came home with two carefully picked out precious rocks in a pouch (all for $3, it doesn't take much to impress my children).  Mr.B was pretty non committal about the whole museum experience but once we got outside and the sun shone on him he just lit up!  This kid is a sunshine baby!

Having a cup of tea with the 'Ladies'
Plans are still being formed and we are moving slowly ahead (although I am also doing an astounding job of procrastinating!) and tomorrow I will start the endless lists of what needs to be packed.  I am thinking my minivan might just need a trailer behind it too!
"Sunshine on my shoulders makes me happy"

From Our Home To Yours...

Tuesday, 9 July 2013

Ocean, Dreams and Funny Faces

The plans are falling into place...we might (might because my life isn't exactly a page by page book) go WEST in one week!  The West Coast is calling to me and I SO want to dip Mr.B's toesies in ocean!

The ocean is so very meaningful in my life as I spent the majority of my childhood, teens and young adulthood only minutes from the water.  I miss it terribly (but not the rain) and the mountains that go with the Vancouver skyline!  I find the ocean cathartic and it has always been a physical and mental healing power for me.  I can't count the number of times that I've needed to think and have just sat on the beach to do just that.  I have seen what the ocean does to Torin, he feels it too and I know Ry can't be that far behind.  Which is why I feel such a strong urge to show it to B...I just have this innate sense that he too will 'feel' it.

One of my closest and most wonderfulest (yes, it is now a word) Friends in this world, that I've now known for 35 years this fall, has a Condo right on Parksville beach on Vancouver Island and we'll be able to stay there for a few days.  I'm just itching to go now!
Yes, it is going to be hard and yes, it will be stressful...but it is a good hard and a good stress (I hope).  I've had people question me (out of love) and I've really thought it through.  I've already got plans B, C and D if needed and I'm no ones timeline but ours. 

I asked B's Pediatrician yesterday if she thought I was nuts (don't worry, she already knows the truth!) and she didn't hesitate and said to me, "You need to live your life...GO!"  She even went so far as to write me a letter to have on hand that basically says to any Dr that I present it to that "Mom knows what she's talking about and if she says B's sick, he's sick!"  How awesome is that?  I feel honoured she's got that much faith in me!  She's been with us since T was 4 (she was the one that diagnosed T with Autism) so she's got a pretty good picture of me.

My plans aren't 100% yet, I'm not completely certain who is driving out with me but my Mom is for sure driving back with us.  I would love to be able to connect with people and introduce you to B but you might just have to come to us!  I'm also planning to have another adult on hand if things go south. 

Hangin' on the couch

Michael and I discussed it and he feels that the possible negatives don't outweigh the positives of going and yes, we need to live our lives!

It's hard not to tell the big boys, they will be beside themselves when I tell them (with a 5am wake up call the morning we leave and not a moment sooner so shhh!).  I'm still not convinced it will all come together and B will stay as healthy as possible until then but I have high hopes.

Crawling break
We have our second Oxsymmetry overnight test on Monday and a follow up with Respiratory the next day to see Mr.B's oxygen results.  We will have a good idea if his oxygenation levels are holding or not or if he needs to be back on at night or not.  I am feeling very confident that he's doing well off of it and was reassured today when his RT and Homecare Nurse were here doing a home check and he screamed his head off at them (guess we didn't get past that medical professional aversion yet...).  He was screaming and crying and was still maintaining a 97%...he's amazing!!!  Of course I felt horrible for Luci and Shawnee for getting screamed at and not getting 'happy' B snuggles and smiles anymore though!

B also had his first Stampede Pancake Breakfast today!  For those of you that aren't from Calgary (or aren't familiar with Stampede), it is a week long celebration that comes with FREE pancake breakfasts all over the city each day for 10 days straight.  It's a tradition and today B got to share in that, now it is my hope that one day he'll be able to EAT some of it!

The other celebration we got to be a part of this week was a Birthday party for Miss Kinley who turned 2.  I was honoured to be invited to the party and it was great to see so many ACH Mom's in one spot.  Kinley and B were across-the-hall neighbours for most of B's first Unit 2 stay and Kinley still resides there.  She is a precious gift and blessing, "Happy Birthday Sweet Girl!"

(The only downside to going was that B was a bit traumatized that I took him back to Unit 2 (remember we've only been out a week) as I think he thought I was going to leave him there!  Poor kiddo!)

Mr.B's 'funny face'...oh how he makes me laugh!  The video of the
game is on our FB page!
As far as Mr.B's feeds go, I've decided not to push his feeds any further then we've already done and will keep with the night time feeds until surgery in August. It just seems easier.

We've also got our next Blood Drive happening this Saturday at 9 am and we are still looking for more donors if anyone is available message me on B's facebook page.

For now we are planning and enjoying the gorgeous summer weather as B can't get enough of being outside! 

The exhausted pose...too much crawling!

From Our Home To Yours...

Saturday, 6 July 2013

Anxiety and Trust Go Hand In Hand

Lil' Buckaroo

The Calgary Stampede is up and running, how is that even possible when the City was in a State of Emergency not even two weeks ago?  A huge amount of hard working people and spirit.  The boys got to go to a 'small parade' at ACH the other day with Grandma, Pappa and Ashley.  ACH has a few of the floats and parade participants come and do a mini parade for those families that are currently at ACH or are unable to attend the full scaled event due to medical limitations.  The boys had a blast and I'm told Mr.B loved it all but the noise level.

I have to say that the parade set a milestone for me...a huge, massive, epic one that required an Ativan for a panic attack...as I watched Braeden go off in the van with everyone else, leaving Momma at home for a meeting (which I'll talk about later).  I've never had anyone or been comfortable with anyone taking Mr.B out without me.  It was a HUGE stress for me to let it happen but also a HUGE accomplishment that we both (B and I) survived.  It is very, very difficult to have that level of trust that B will be tended to properly and be safe (being knowledgeable to watch his breathing and for retching).  I think part of me was able to let it happen simply because they were going to be at ACH for the parade...it's not like there weren't at least 100 medical personnel at close proximity (but it was still terrifying for me).  I don't know how soon other ventures will happen as there aren't many people comfortable with B's complexities and I'm not too sure how much my anxiety could handle either!  It is the first HUGE (think I said that already) step though!


Lots of giggles
We've got a bit of a sad house this morning as we had to wave goodbye to Grandma and Pappa as they started their way back to Vancouver.  As much as we love our life in Calgary it is certainly hard to have family so far away.  Thankfully we have family that also likes to come out and visit!

Snuggles with Grandma Jean
It is amazing how a week and a half can just fly by and all the things I'd intended to do since I had extra hands around remains untouched for the most part!  I love that I have great intentions...I always seem to think since I'll have extra people around that I'll finally get my house organized (caught up, etc.) but I think it's time to realize that I'm somewhat delusional!  What I did do though is take some naps!  That was a productive use of time, the rest just has to wait.  I do have to say that I did get all of my FSCD paperwork up to date.  It is a very long, drawn out process to complete even one month worth of Disability paperwork, times two kids (but I am still thankful that we even have it, the funding not the paperwork).  I tend to not get to it monthly so when it is a few months to do at a time it is very time consuming and overwhelming.  Once upon a time I was an organized (ok, slightly more organized) person but my time when I'm fully competent (serious lack of sleep) is at a minimum these days!

Hard to be a Cowboys when hats get in the
way of doors and walls!
Mr.B is plugging along but still really not able to tolerate a change in his feeds.  I tried going up by 10mls/hr yesterday and he retched right at the end of his feed, unable to handle the last bit of change.  It is frustrating from the sense that we went from being able to complete feeds successfully that were more than twice the size he takes now AND that there is really no reason for the change.  I know I need to just bide my time until surgery in a few weeks but I also miss the freedom of only 4 feeds a day.  The night time feeds are certainly taking their toll as well but I don't see how I can be more tired, it's not like I was getting stellar sleep before.

Daydreaming out the window
One good thing is that B isn't having his clusters of Night Terrors (for the past week we've been home) but he is very unsettled at night.  I am wondering if it is due to the overnight feeds but there was no report of it while he was in hospital.  It is just so hard to know what is physiological and what is possibly neurological.  I guess if his Dr's can't figure that part out I'm not going to either.  All I need now is an overnight Nanny...once I win that lottery that is!

How one little boy who sleeps so little at night can be so darn happy and loving during the day is beyond me!  I try to take that lesson from him but I'm still a pretty grumpy Momma some days with my lack of sleep (as I'm sure those of you around me can contest to!).

Finger 'death grip'
Braeden is seemingly getting physically stronger each day, he is just itching to catch those big brothers of his.  He is doing more short spurts of crawling forward and is getting better at holding himself up with the window frame to hold on to.  It's only a matter of time before he's pulling himself up now.  He's already making the motions of doing it himself and he loves to just sit (kneel with a death grip with his fingers) and gaze out his bedroom window.  I can't wait for the day when I get that baby hand on my leg wanting up as I'm standing in the kitchen (or wherever)!  The ironic thing is that it seems like the stronger/faster he's moving the more pronounced his spinal curve is getting.  It is astounding how children find ways to compensate for weak muscles elsewhere and don't let something like mild cerebral palsy hold them back!

So!  My exciting news!  I mentioned awhile back that I'd been referred by the ACH's Manager of the NICU to become part of a Parental Advisory group for Alberta Health.  I'm so very excited for this opportunity as it will be as a Parent/Patient Advisor with the Critical Care Operational Clinical Network (sounds impressive right?!).  The role would be to " play an active role in helping to improve the experience, quality and safety of patient care. Alberta Health Services value patient and family perspectives and is committed to enhancing patient experiences at all levels of care".  

I am honoured that they've considered me for the position and I am going to sit in on their next meeting so that I can see how the process goes and I can make the final decision if it (the position) will work in my life or not.  There is so much potential and growth with being a part of the Health Network(s)!  If I can somehow assist in making another families experiences smoother, simpler or even mildly less stressful then it will be worth it.  What I really get to do is voice my opinion and talk all about Mr.B...shouldn't be too much of a stretch I think!
Cowboy Siesta!