Sunday, 29 September 2013

Praticing the Art of Letting Go

So I think, I think I've got B all cleaned out and ready to start anew.  The avocado oil (the grandiose idea) backed him up horribly, awfully, terrifyingly.  How, how, how does an oil supplement constipate a child?  I really don't know, it is Mr.B after all.

The sad part is that it took me a few days to catch on and by that point he was a goner, past the point of painlessly reversing it.  I had to watch my poor boy writhe in pain trying to pass 'clay' while (not so) patiently waiting for the PEG3350 (stool softener etc) to work through his system.

I was SO excited!  I was feeling SO pumped that maybe B could take some real food...Now?  Just feeling a wee bit deflated.  Certainly not defeated, but yes, deflated.

So we'll start again, we'll start anew.  This whole process of elimination stuff SUCKS.

Goofy Gus!  How I found him after his nap!

After some more careful research I am going to go with Coconut oil (which was what I was going to do originally!).  My hesitation with coconut oil was simply that it thickens when it is at room temp and if B had a mic key g-tube (removable tubing) I wouldn't have hesitated but now that he's got the PEG (permanent tube out of his stomach) it's different.  If his PEG tube gets clogged we're screwed, no food in, no air out.  As I said, I did a lot more research and got some great testimonials from other Mommas that have gone this route so I'm going to do it...I'm jumping back in, going with the original plan.

It is amazing how your perspective can change once you get a bit more experience behind you.  A year ago, when we were approaching B's first birthday I was so desperately hoping that he'd be able to try a bite of his birthday cake.  Now, when his second birthday is a mere month away I will be happy if he tries cake for the first time at his fifth birthday!

I heard so often in the first year how important it was to get him to start 'tastes' as soon as possible and how it was even more important to continue to persevere.  All good advice mind you and important but...there is always a but my friends.  If it gets to the point where the child is feeling pressure and stress, and the parent is feeling pressure and stress...there is just no possible outcome that is going to be good or pleasurable.  Again after looking back, (and talking to countless people that their kids started eating at 5, 6, 12, etc. and are doing great) I wonder why I succumbed to the need to 'do' things how I was 'told'. 

Parenting is all about gut feelings, it has to be.  There is no 'guide to parenting' that makes sense for all kids.  You can read as many books as you'd like (and judge all other parents on how they do things) but nothing, and I mean nothing will prepare you for parenthood. 

Now take into account all those books that get read and all those 'birth plans' that get written (didn't I have my head in the clouds!)...and you have a child with special needs that no one, even the doctors can understand.  There is no book of B (well this blog I guess is a start), it is all about my gut.  How many of us have said, "damn, I should have listened to my gut!" on more than one occasion?

What my gut is telling me now with B is that I am feeling like we are missing something (well lots of things but we have to start somewhere).  There is something more going on with B's digestive system, there has to be.  The question is whether or not it is in fact his gut or could it possibly even be his brain. 

I had a long chat with Dr.Cassie earlier in the week about my concerns and she was concerned when she saw how thin he still is.  I asked if it was possible that maybe he'd had another stroke, small enough that there wasn't huge signs but that it's affected his ability to digest and move food.  She didn't think it would be a stroke but we did do head measurements to see if his head has swelled at all.  His head circumference really hasn't changed (which is a good sign being as he's got extra fluid on his brain) so she was feeling confident that it wouldn't be a brain tumour (these are scenarios that go through my head at 3am, it's another thing to hear them voiced out loud).  She contacted Dr.V (at ACH) and they chatted about what the next steps should be.  I was waiting with baited breath about what they both thought we should do and the decision was made to...wait.  I hate that sentence, "I think we should just wait and see".  The problem is that his GI Dr is off work until mid October and really she needs to weigh in on all of this, it really is her area.  Am I in a panic that something needs to be done?  No.  But am I looking at this more and more that there is something else, something new?  Yes.

Torin making B his formula...such great boys I have!
For the time being I'm just trying my darndest to get this kid to gain some weight.  I think (shh, not too loud) that he's on the road to gaining again.  The avocado oil might have made him miserable but it did at least put some weight on him!  He is still on the move any chance he gets (even if it means dragging his head when he's tired) so it's hard to keep the calories going in.  Justine is challenging him to 'sit' more and more and we are all doing bits of 'standing' with him.  He gets right annoyed with us but I can also see he's getting so much stronger.

We also had a hearing appointment this week with the lovely Beatrice (Audiologist) and I felt badly for her since B was acting like he was being tortured.  Don't get me wrong, it stresses me out when B is so miserable with everything 'hospital' but it is also hard on the staff who love him.  We did successfully do a bit of testing (he's still testing the same, moderate loss on both sides) and we did manage to get new ear molds taken.  It is funny how one week his hearing aides fit and the next they fall ears really have 'growth spurts' too?

I should have known that music class was going to be a bit of a stretch after the hearing appointment but we still persevered.  He clung to me pretty much most of the class, whining and yet he watched Sarah (music therapist) out the corner of his eye the whole time.  He did touch the 'rain' drum with one wee finger at one point!  Such a nut!  It wasn't  until the last song, at the end of the hour, that he let me turn him around.  When we were done I put him down on the ground and he squealed with glee and took off.  Everyone else was stunned that he was able to be on the move!  He was back to happy, laughing B since he was free to explore.

Funny faces with Justine
We had started our week with Rylan home with strep throat and ended the week with me sick with a head cold.  I started feeling rotten mid week and I just kept telling myself it was allergies (we've had to start the furnace this week, boo).  I just kept taking my homeopathic remedies and hoped for the best but I woke up Thursday feeling hit by a truck.  I wasn't feeling much better by Friday and the big boys only had a half day of school.  Justine (B's aide), bless her heart offered to take the big boys to her house for an afternoon adventure.  Justine has her own special needs sibling, Rachel, whom the boys are quite enamoured with.  I love their curiosity and their honesty.  These are kids that are going to be raised with thinking that people are 'different' if they don't love someone with special needs!

When I got back from picking the boys up from school Justine asked if I would be okay with her taking all three boys with her so I could rest.  Rest?  Alone in the house with no kids?  I mean alone??   Ready for it...I said YES (aren't you all proud of me?).  Was a nervous, oh hell yes.   Did I feel guilty, um, have we met?  But I still agreed and I still went through with it.  I was only mildly panicked as she drove my van away with my three precious cargo onboard.  As it turns out they all had a blast and I got to meet Rachel (and Chad who is here from Texas) when they came to drop off the kids.

I have no doubt about people coming into your life when you need them.  Justine came to us via Heidi (who you'll remember was with us for the summer).  Heidi has worked with Rachel (Justine's sister, are you following this?) for 6 yrs now so when she (Heidi) got a different job offer through the university she asked Justine if she'd be interested in working with B.  The interesting part (I'll wait if you're still trying to piece them together) is that Braeden has many similarities to Rachel.  Granted Rachel is now 21 but her beginning was much like B's is now.  Rachel has a difference in her 2nd Chromosome (it's not typed as a 'syndrome' because kids with the 2nd chromosome issues all present somewhat differently).  I looked up what that means (it's a long description, I'd have to get Justine to explain it), and the commonalities between B and the 'explanation' are certainly there.  Who knows!  I honestly have no idea of what the geneticists haven't looked at anymore since his DNA has been thoroughly looked at. 

Long story short, I am still in the learning curve of 'letting go'.  I have been so blessed with the help that has come to us via B.  When Ashley came to us I was able to finally begin my journey of letting go some of my stress and responsibility to B (when at home).  I was able to comfortably nap for the first time in a year and a half, knowing he was going to be okay (and if not she'd come get me in a hurry).  We then moved through Heidi and now onto Justine.  All three wonderful women, all very different, but all awesome with B (and the big boys too).  Bit by bit, little by little I'm trying to forgo some of my control.  I won't lie, it is hard.  I'm still going to feel guilt when I take the time to nap (even though I was up with B all night the night before).  Going back again to a year ago when I didn't feel as though I could or would want to leave his side, there is growth, for both of us.

Over and over again I hear that "you need to take care of yourself", and I know that it is true but it certainly doesn't come with a cost in and of itself.  Will there ever be balance in my life?  I don't really think so, not completely but then is there ever really?  The balance will shift as we sort through these murky waters of what is B and they'll shift back again when something new comes up. 

All in all at least now I'm starting to practice, after all practice makes perfect no?
My precious prince

From Our Home To Yours...

Sunday, 22 September 2013

Can You Tell We're Related?

So did something last weekend that I'd would have thought 'unthinkable' a year ago...I went away for the weekend (the whole weekend even) to the West Coast to surprise my sister Marisa for her 40th Birthday.  For those of you that haven't read the whole blog (I know, it's long), I have these three amazing women that support me and guide (boss) me along my journey of life.  I have not one, not two but THREE big sisters!  I know I've certainly written about them before and what they all mean to me. 

I kinda might be the impulsive one among us (big surprise being the youngest I know), and so I brought up the idea of a 'sister's weekend' as a surprise.  The other two were completely on board and we started discussing logistics (they all live on the West Coast).  I didn't really stop and think for a moment what it would really mean for me to be away for an entire weekend without the three wasn't till I was booking my plane ticket that I started to feel a wee anxious.  The thing is?  Everything about the weekend fell into place, from having my in-laws here to being able to stay at my (most fantabulous) friend's condo for the weekend.  Even the planning and the reservations for our plans fell neatly into could I not go?

I spent the week before at ACH with B wondering if he'd be going home in time for me to be gone or not.  I was kind of torn about the best option, for him to be home or in ACH under 24hr medical supervision...not that I doubted my wonderful husband for a second!  Things got a little rough when we trialed a new formula just days before I was set to leave and B had a horrible reaction to it.

Always seeking sunshine
The plan now that B is approaching his 2nd Birthday (in less then two months!!) he should be on more 'real' food (my opinion and the Dietician's).  We thought, after careful consideration and chatting with the other Dr's, that B should be able to try the Pediatric Complete formula (roast beef in a can essentially).  Of course the hesitation was more to do with the fact that it's a milk based formula and the thought (once upon a time) was that B might be allergic to milk.  His GI felt pretty comfortable that it most likely wasn't a milk allergy at all but just that he's sensitive to changes...

So we tried and I have to say I was a bit scared (to say the least) since our last attempt at changing to a new formula was disastrous with non-stop retching.  I was amazed that he handled the first feed without incidence, then the second and even the third.  I was floating on cloud nine on the way home that night thinking all the good things that would come with a new and better diet for B.  He was due to be discharged the next day since he'd done great and I was feeling like we'd finally turned another corner. 

When I got to the hospital the next morning I walked into B's room and he was mid-feed.  I looked at the formula in the bag and immediately said to Justine that it wasn't the same formula that he'd had the day before.  This formula was brown, no mistaking it and the day before it had been white.

You think you can keep me out...
I pretty much figured out that he'd not been changed over to the new formula after all the day before.  I immediately asked his Nurse about it and she double checked that he'd gotten the right formula that day and even opened a new can and poured it into a container for me to see the colour.  It was, you guessed it brown, not white.  So I guess we'd not trialed the new formula and he'd just been started that morning.  The good news was that he tolerated the first feed without too much change and I wasn't feeling totally deflated.  It was shortly before the second feed was due that he had his first retching episode.  Retched, vented, happy boy and second feed started...and second feed stopped because of non-stop retching...sigh.

Studious boy!
Apparently it is in fact a milk allergy.  The horrible part of it was that the first feed was going through his GI tract and he was miserable and in pain.  I felt terrible for putting him through it and never thought he'd get one feed in and then have his bad reaction.  He had a pretty rough day trying to work it through and the Dr came in to see me and said to me that he would be happy to do whatever I wanted.  I asked for B to be put BACK on straight Pedialyte for the next 24 hrs to clear out his system and to give his guts a break.  A huge step backwards for all of us.  Thankfully after the 'break' from feeding he was able to tolerate his feeds (regular formula) the next day and (finally) came home on Thursday.

Friday rolled around and I left that morning (after a little cry while putting Mr.B down for his nap).  I knew that I could go and I knew that it would be good for all of us to have a break and for Mom (me) to maybe find a touch of sanity (HA!).  I won't lie, that plane ride was awful and the guilt was miserable to deal with but I forced myself to look forward and knew I was only an hour long flight away from home.  By the time I arrived in Abbotsford, ate lunch and read uninterrupted I was feeling pretty excited about the weekend.

Long story short my oldest sister Christa kidnapped the Birthday Girl Marisa, (who was beyond surprised) and came to pick up myself and my other sister from the ferry (we drove to Vancouver and took the ferry to Vancouver Island for those of you not familiar with where I was going).  The Birthday Girl was shocked to see my sister Monique at the ferry terminal and as she was hugging her and crying I walked around the corner.  I'm not too sure if she was more surprised that I was there or that I'd in fact left B at home in Calgary.

We had a wonderful weekend, we ate, laughed, and ate some more and laughed even more!

And guess what?  We all survived!  Braeden, (the stinker) even pretty much slept through the night for Michael on the Friday night. (Although B had a miserable night on the Saturday night so I think that both he and Mike were happy to have me back on Sunday).  I think Torin's now forgiven me for going to his favourite place on the planet (with some of his favourite people) and I think Rylan has recovered from the fact that I took a plane without him (he's desperate to take a plane).

working hard
Mr.B still had some rough days last week and wasn't really back to himself (energy) till the end of the week.  The thing that scared me is that I could see that he'd lost weight in the short two days I was gone.  I knew that he'd not been gaining much but to be able to notice he'd lost weight was disconcerting.  We had him weighed at his therapy appointment on Thursday and I felt sick when I saw that he'd lost almost a full pound in the week he'd been home.  Certainly not the direction we were trying to go!  I was frustrated because I'd been getting no sleep (even less then normal) so that I could have him on continuous feeds at night so that he could get his full calorie count for the day.

His Dietician and I came up with the plan to start him on an oil supplement before his daytime feeds to boost his fat and calorie count.  I had found a great bottle of avocado oil on my weekend away and so I was happy to incorporate that into his diet.

The good news was the next day when we had him weighed at home with the Homecare Nurse she had him back up 200 grams so the weight loss may not be as bad as I initially thought.

I started the avocado oil supplement on Friday and he is seemingly tolerating it thus far.  He even had a (halfway to normal) looking stool today (fyi, I know but it's serious stuff in my house with B).  I have noticed he's got a rash on part of his face but I think (oh how I hope) it is leftover from the tape he had on his face Thursday night when we did another sleep study in ACH overnight.

32 probes on and ready for my (no) sleep study
I got a call on Wednesday asking if B could come in for a sleep study on Thursday night.  Sure, why not (the girl was shocked I said yes).  Off we went Thursday night to the (no) sleep clinic.  Mr.B was a trouper (of course) as he got the probes all 'glued' onto his head and body.  He certainly wasn't impressed but I expected him to absolutely freak out when we arrived and he saw the crib but he was fine.  I guess spending the few weeks before as an inpatient had some good qualities too.  I was however not impressed to learn that they would consider trialing him on c-pap possibly into the night...Braeden thinks c-pap is the equivalent to hell on earth (imagine a constant flow of air being forced up your nostrils and you having to breathe with it).

I have to say it was a pretty 'typical' night for B, he was up consistently through the night (but was just a little more angry then usual since it's obviously uncomfortable to sleep with bumps all over your head).  I'm not too sure how much info they were able to gather because he (and of course by proxy, I) were up a whole lot more then we were asleep.  It will be interesting to see if B was in fact 'awake' all the times he was freaking out or not (she couldn't give me a definitive answer).  We did not have to trial c-pap again though which was a relief AND it means that B's oxygenation when he's sleeping is GOOD!  Such a strong boy!

Snuggles with Angie
I am happy his lungs are getting so much stronger because illness is circling our house like a vulture and the hospitals have been seeing cases of flu and RSV already (very early in the season).  Rylan has come down with a bug of sorts (started like flu but is now looking like Strep) and is very sick.  All we can do is hand wash, hand wash, hand wash and sanitize like crazy each night.  I spent pretty much the whole weekend cleaning house anyhow so at least it is easier to maintain at this point.

Jenn and B (wearing the shirt Jenn bought him in Vegas
"I'm kind of a big deal")
We did have (yet another) successful Blood Drive again on Saturday.  The staff at the Blood Bank love to see how B is growing and changing.  I had the nicest man ever come up to me and ask if B was my son.  I replied, "yes" and he said, "Then I am so honoured to be donating today".  I LOVE the kindness of strangers!

We are off to see Dr.Cassie (B's regular Pediatrican) tomorrow and we'll have him weighed again there.  I am also going to bring up the notion that I'd like to have her consider getting an MRI for B since it's been over a year and I'd like to have a 'baseline' to go by for future.  I just have such a nagging feeling in my gut that we are missing something with his intestines.  I have no clue what, but it just really feels like there should be some sort of answer to why this kid was able to handle feeds of 250mls in an hour and can now barely handle half of that.  The scope last month showed nothing, the biopsies showed nothing and the new tube is in so the stomach has more space...there has to be another reason.  I'm not too sure if it is realistic for me to request or not (or receive) but we'll see.

the cereal workout
Mr.B continues to be on the move as much as possible each day and is continually finding new things to get into.  I've include a link (click here) of the latest YouTube video upload of B playing his 'cereal hockey' in the kitchen.  The kid just cracks me up, now if I could just convince him to clean up afterwards...

From Our Home (Finally) To Yours...

Tuesday, 17 September 2013

Blankie Stories III (Grandma Jean)

Blankie Stories III...

Dear Grandma Jean,

You and Pappa left today and I was so sad to see you both go.  I know that you have as much difficulty leaving me as I do letting you go home!

I wanted to thank you for the lovely blankies that you brought to me this trip.  My Mom told me that you bought them at the Lions Gate Hospital (where my Brother T was born) in North Vancouver and that you'll think of me each time you go there.  That's pretty suiting since my brother spent time in the NICU there when he was born (and my Mom thought that was stressful!)

I'll be thinking about you and Pappa when I go to sleep with your soft blankies covering me, the holes are just big enough for my fingers to go through so I can suck my thumb.

I love that you thought that I needed TWO, you must really love me Grandma!

I also wanted to thank you (and Pappa) for all of the walks you take me out on when you're here for a visit.  I love nothing more then being outside!

I'm also so happy for all of the chances we had for snuggles, I sure love Grandma snuggles (maybe even more then Pappa snuggles!).

I really hope that you'll come back soon, my Mom said that she's missing you both already!

Thank you for being such a wonderful Grandma and spoiling me when you get the chance, I just love you and miss you so much!

Your Sweet B
xoxoxoxo (you can share with Pappa if you want)

P.S. You don't have to worry quite so much about me Grandma, I'm one tough cookie!

P.P.S. Mom cried writing this so you don't have to be too annoyed at her for making you cry reading this!

Walking With Grandma
Author Unknown
I like walking with Grandma,
Her steps are short like mine.
She doesn't say "now hurry up"
She always takes her time.
I like to walk with Grandma,
Her eyes see things like mine do,
Wee pebbles bright,
A funny cloud,
Half hidden drops of dew.
Most people have to hurry,
They do not stop to see,
I'm glad that Grandma was made
Unrushed and young like me!

From Our (Emptier) Home To Yours...

Blankie Stories II (Linda and Colleen)

This post is a bit late as we got the blankie last week but better late then never!

This blanket came to us via one of B's NICU Nurses, Colleen and her sister Linda. 

Colleen was one of the Nurses that saw B through that first
October 2012, from the post "One step forward, two back"
(terrifying) Christmas when B was coming back to us from his Sepsis/Meningitis.  You also might remember that she was the NICU Nurse that came and put a line in B's head when he ended up in PICU last October and they could not get a line into him.  I asked for them to call the NICU with the hopes that Colleen would come and sure enough she did! 

I put the call out for blankies and Colleen picked out the colours and found the 'wool' in Canmore.  (You can't see it from the picture but it is lovely and heavy and oh so soft!)  She then asked her sister Linda if she'd consider knitting it for Mr.B.  Linda agreed and here we are!  They came by to deliver it in person last week and I'd say that it was an instant success with Mr.B!

Thank you so much to both Colleen and Linda!  Mr.B loves, loves, loves it!

 From Our (Blessed) Home To Yours...

Tuesday, 10 September 2013

Musician in the Making

Not often I have time to post not one but two postings in a day...

Checking out the rain drum with Pappa

Such noise it makes!
We got to attend our first music class today (Mr.B, Justine, Grandma, Pappa and I...we were 1/2 the class!) over at Rotary Flames House.  I thought B would be so excited, and he was but he was also a bit unsure about it all!  Sarah, the Music Therapist from ACH, is running 7 classes for the kids of RFH to attend.  It will be a lot of fun to have B in something interactive and it's always nice to meet other RFH kids and their families.  The amazing thing was that Sarah told us to tap our hands on our knees and B actually started tapping his hand on his chest in time with me...AH-MAZ-ING!  He didn't keep it up for long but he did it and it was so very cool to see it happen.

B's first piano lesson with Justine

The plan this morning was actually to send B home.  He's back up on his full bolus feeds (five small feeds with continuous overnight) and he's tolerating it well.  The crummy part is that he's still 'positive' for the Entero Rhinovirus so he's still 'technically' on isolation.  His energy levels seemingly have come up also over the last 24 hrs so it's good news!

Wearing his big brothers head
phones and not too sure about
it all!
The plan to send B home was a good one but it got changed till tomorrow because we decided, since he's here and all, we'll just shake things up and try something new.  We have moved B to a new, Complete formula, one that's made with actual food...shocking, food.  Since his guts are SO sensitive he's been on an amino acid based formula for quite some time now but he's also almost 2.  I have heard from a few different dieticians that they've seen great improvements in kids with GI difficulties by going to food-based eating.  Sounds like a no-brainer to some of you I'm sure but keep in mind that Mr.B is exclusively g-tube fed AND he now has a g-tube that is permanent (for the next few years) and can't be easily removed or exchanged.  Why is that an issue?  When you put 'food' through the g-tube you have to flush the tube after with water to 'clean' it out and it can get quite gucky.  B already has a small stomach so we need to be careful at how much 'food' we can give him vs how big of a flush he'd need afterwards to clear it out. 

Brothers helping me take our B for a walk outside
The other things about going with a 'food' diet is that 1) I'd need a top of the line blender (we're talking at least $700) and 2) I'd need the time to make all the food, process it in the blender and then separate, freeze...uh, I'm tired just typing it all!  Now I'm not opting out of that, and yes, it would certainly be the best he could eat but we are trialing a pre-made food-based formula first.

Now THIS is a funny face!!  Love it!
The major issue (and why we've not attempted to try it until now) is that it is a milk-based formula and the thought was that some of B's issues with other formulas point to a milk allergy.  His GI is confident that it mostly likely isn't a milk intolerance per se but just that his tummy is that sensitive.

I am happy to say that we are now two bolus feeds in and NO RETCHING!  This is a very good sign! 

The plan is to go home tomorrow (fingers crossed) and continue on this path.  I'm feeling a bit excited (don't tell B!) that we might be able to start getting those intestines happier.

We also got a couple of visitors late last night as well to make life a little bit nicer...the in-laws are here for the next few days so the kids are very excited! (insert: "but Moooommm, Pappa said....").

We also got to do something very cool yesterday, I got to watch Rylan donate his Birthday money to ACH.  They do the coolest thing for donors!  They let them print their names on a heart sticker, stick it on the wall, write their name on a huge check and hold it up for a picture.   They ensure that the kids feel as important as they are and I am repeatedly impressed by this hospital and this is no exception.  I am so proud to be a parent of such giving, kind and generous little creatures!   

Our latest 'addition' to our family, Justine
So life goes on, a bit more each day and B's getting stronger seemingly right before our eyes at times.  I have no doubt in my mind that this kid will walk and he'll do it sooner rather than later.   
From Our Home (Unit 2) To Yours...