Sunday, December 28, 2014

The Best Christmas

This marks the best Christmas of my adult life, simple as that. Let me lay it out for you:

24th was dinner at our house with my sister's family. We made a traditional meal of our mom's - not turkey, but something she made regularly for company. Better than turkey and probably should have stopped all of our hearts from butter consumption on the spot. But it didn't and it was delicious and many of the dishes have not been made or eaten since before she died twenty years ago. After dinner the five kids got into new Christmas jammies and we let our three stay up waaaaaay too late while we danced, played games, and laughed our heads off. It was well into Christmas day when Jordan and I finally rolled into bed - full, tipsy, and with a living room full of goodies we knew the kids would love.

25th we all woke up tired, but happy. The kids were thrilled and I mean THRILLED with their Santa gifts and the rest of their loot. The strange thing is, they actually remained calm, looking every gift over in detail before asking for the next one. They were full of appreciation and admiration for everything, and although they still got too much, we really felt like they savored each bit of it. No chaos, no fits, no arguing, no raised voices. Three happy kids opened presents and loved every minute.

From presents we moved onto a delicious breakfast and playing with toys. And playing and playing and playing. And maybe eating a whole ton of random candies. By the time the afternoon rolled around they had inventoried everything and I had happily removed all traces of recycling and random Christmas tree needles. Again, I felt nothing but calm from everyone. What a change from the usual chaos!

After lunch Jordan headed to bed (pre-night shift) and the kids and I vegged in front of the TV. All while still in our jammies! I may have partaken in some caesars but it's Christmas so you're allowed to drink alone, right? (Plus my girlfriend assured me she was drinking with me in spirit so that counts.)

As it started to get dark, Jordan arose and we had a delicious Christmas dinner of nachos, chicken wings, and candy cane cheesecake. Not exactly what you'd call traditional, but I'm not sure if just the five of us will ever spend Christmas completely alone again, so we let the kids determine the menu. What good choices they made.

After dinner three very tired kids showered and were in bed early. I then proceeded to use numerous of my new bath products followed by a mani/pedi with my new nail polish and a Mad Men marathon on Netflix.

Boxing day was more of the same and on the 27th we hosted Jordan's family. More presents and food, and more importantly love all around.

Today the decorations and very dead tree are coming down and the house is starting to clear through the tornado and look and feel fresh again. Another year in the books. I have never felt so content and fulfilled by Christmas; I hope yours was equally as merry.

I'll be back in a few days for my regular New Years recap, but in the mean time safely and happily enjoy the rest of the holidays.

Wednesday, December 24, 2014

A Christmas List - 2014

Dear Santa,

What a year! And dare I say in a good way? Seems like a long time since we've been able to say that, doesn't it?! I mean, look how far we've come since I wrote my first letter...

This past year has flown by with two massively massive "projects" - our home renovation and the boys starting school! I never thought I'd survive either of them, but lo and behold here I am still standing.

So here's what I ask for in the wake of this amazing year:

Please let us continue the upward swing of this momentum we are on. Things are finally starting to go well for our family and I think you can agree it's been a long time coming. The kids are happy and settled in school and activities, surrounded by friends who adore them. Not only do we have a roof over our heads, but a beautiful, functional one that will help us to take care of Asher safely now and in the future. We have a reliable, wheelchair accessible vehicle. Jordan has two amazing jobs and if all goes according to plan, I too will have a job in the not too distant future (Santa, feel free to drop one of those in my lap - somebody's gotta pay for this reno if you catch my drift?!) And most importantly - we are healthy (fingers and toes crossed and knocking on wood). We have absolutely everything we need.

Let us all stay strong, happy, and healthy. That's it, that's all. Think you can deliver? I've been on the nice list this year, I assure you (contrary to what my children may have told you).

Peace out Santa. And get ready to eat some of my chocolate bourbon fudge that'll be out waiting for you. If that doesn't sweeten the deal, I don't know what will.

Mama Trousdell

ps - This Christmas letter wouldn't be complete if I didn't wish some good fortune towards my Canucks. What we're after has the same initials as you Santa. That's all I'm saying.


For 2009 - 2013 letters, click here.

Update: Nolan just saw this blog post and decided to reproduce the above photo. :)

Monday, December 22, 2014

Playpak by Firefly

Remember the UpSee? That ingenious little piece of equipment that we got for Asher and I blogged about it here? Well Firefly, the company who created the UpSee and a bunch of other great products, is launching some new products. I'm honored that they've asked me and Asher to try one of them out and tell you about it*.

I present to you Playpak - The portable activity kit.

All wrapped up in a lightweight bag is an entire activity centre that includes rolls, wedges and supports (designed by clinical experts) that allow children to try endless combinations of developmental postures.

It comes with an online therapy guide that shows you how to mix and match Playpak components in three key therapeutic positions – back lying, tummy lying and floor sitting. It's full of extra storage compartments, it's colorful and stylish, and it's easily foldable from bag to therapy mat in just a few steps.

It's meant for children from birth to age 4 and any GMFCS level, however Asher is still able to use it at more than 5 years old.

Isn't it pretty?! Here's the bottom line about it: I love it; I wish it had been around 5 years ago when Asher was a baby; and I would highly recommend it to anyone with a small child with motor delays. 

First let me say it's high quality. The workmanship is beautiful (just like the UpSee) and you can tell it is built to last. They really have thought of everything, including how easily it all fits back together to fold up.

Next - the options for positioning are endless. I can only imagine how much fun our early intervention physiotherapist would have had setting Asher up with different positions for side/back/tummy lying, as well as sitting. When I think of the multitude of chairs, rolls and wedges that she carted in and out of our house on a regular basis - and it all could have been achieved with this simple little pack?! Brilliant.

And not only therapy - it's also a portable chair. My friends can attest to how much "stuff" I used to have to lug to their houses to keep Asher comfortable when visiting - and to think I could have had it all wrapped up in one simple package that I could sling over my shoulder? Again let me say: Brilliant! I cannot express the value that comes with "equipment" that you can carry so simply, especially when you are also carrying twins who can't walk!

My greatest regret about this product is that it's being released now and it wasn't around when Asher was younger! In fact I feel that way about all of Firefly's products, because they're all pretty wonderful. If we were back at the beginning of our journey when Asher was a baby, and I could have seen the future and just how much equipment we would need, I would have jumped at the chance to have a product like this or any of their others.

All that said, although Asher is definitely on the tail end of Playpak's usability at his age (it's ideal for children from birth to age 4) we can definitely still use it. We have hardwood floors that provide no cushion, so now we have a ready-made mat for stretching or even just lying on the floor. But more importantly, it gives us a convenient way to let Asher floor sit without a chair and we are even able to walk away from him safely for a second - impossible before now. Here he is, happily sitting in a few different positions:

"Long sitting" - with the U-shaped stacked supports behind him and the blue pillow under his bum

Criss cross apple sauce with the U-shaped supports stacked behind him, the long roll capturing his feet, and the strap across his hips as a sort of seat belt

Criss cross applesauce again - but without the lap strap, allowing him to bend forward more and practice catching himself if he starts to fall

Kneeling with the U-shaped supports in front of him and the roll capturing his feet from behind. 

Same, shown from behind.

And not to be outdone, brother wanted in with his self-created pose. We call it "Do-Nothing-Doll with blue pillow and seatbelt". A very innovative yoga move I dare say!

Looks like fun, right?! And (in Asher's case at least) therapeutic at the same time.

The Playpak is on sale now and ships worldwide.  And while you're on their website, check out some of their other amazing products. (The Scooot?!! My God that thing, I could not be more in love with the idea of it! Unfortunately without better use of his arms Asher couldn't have maneuvered it well - but if you have a child with mobility issues I beg of you to look at it and see if it would be a good fit!). 

Yes, the Playpak is an investment but I promise you that if you have near the amount of therapy we had when Asher was an infant/toddler/preschooler this will be incredibly well used. I can also tell you that "you get what you pay for" and this is extremely good quality. I stand behind Firefly and their products with confidence, and products like theirs really are life changing for not only the children, but the families, using them. 

*Thanks to Firefly for giving us the opportunity to trial this wonderful product. Although they're also happy to tell you how wonderful this product is, all opinions expressed in this post are my own. 

Sunday, December 21, 2014

Tales from the Vault - Christmas Lists 2009 - 2013

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.

Every year I do a "Christmas List" post around this time of year, and link back to all of the previous years. Well considering none of those posts exist on this blog anymore, here they all are together in one place. This year's version is coming soon, but in the mean time take a seat and grab a box of kleenex - they get increasingly more tear-inducing as the years pass.


Dear Santa,

I watched that WestJet video that went viral (how cool was THAT?! - if you haven't seen it, I beg of you to click on that link) and wondered to myself what I would have asked Santa for if that had been me. Honestly, I have no idea. I need nothing. Really, and truly. I know there are far worse problems to have than to be stumped about what to ask for at Christmas. Talk about #firstworldprobs.

Sure, there's some stuff I could use. "Newer" of pretty much everything we own would be nice. A giant sum of money to pay for the renos we hope to undertake and the wheelchair van we need to buy? Yup, that would help too. Canucks tickets in a luxury box, meeting the team afterwards, and possibly getting swept away by Kevin Bieksa….

Wait, what? I got off track for a second there. Back to the realistic list.

Here is the thing. I have absolutely everything I need, wrapped up in Jordan, Rio, Nolan and Asher.

Let's take Jordan. Just the other night when wrapping Christmas presents, I spilled the entire contents of my water bottle on the bed. On my side. It made a giant puddle that soaked through all bedding including the mattress. Totally my fault, nothing to do with him, yet Jordan slept downstairs, in the cold basement, on the crappy futon, so I could sleep on HIS side of the bed. I know that might sound silly but that gesture reminds me what he is made of. He's a keeper.

Then there's Rio. I don't know where to start. That girl is a gem in every single manner. Even when she misbehaves or we argue, she is back to her sweet self within moments. She hugs me at random times just to tell me she loves me. She adores her brothers in a way I can only compare to how a parent loves their child. She is smart, talented, and pretty much who I want to be when I grow up.

And Nolan. My goodness that child is a handful. He tests the bounds of my patience, while at the same time his huge heart makes mine grow three sizes. For everything typical we have missed out on with the boys, he makes up for it a dozen fold being the most boyish boy I know. He keeps me on my toes and makes me laugh like none other. His hugs melt me and he compliments me every chance he gets.

Last but certainly not least, there's Ashy. My inspiration and my strength.Whenever things get tough, I keep going because of him. I don't mean just figuratively either. Literally - when I am out on a run and I am feeling tired and wanting to stop, all I think of is Asher and how hard he works at everything. I don't let him quit, so I don't let me quit. It's really quite simple. He defines all that is hard working and positive and very little ever seems to get him down. He is our light.

So to reiterate Santa, I've got everything I need in the four people I share my life with. If you could keep them safe and healthy that is all I ask for.

Merry Christmas,
Mama Trousdell



It's time for my annual Christmas list again, just squeaking in under the wire this year.

Seeing as how I won't be posting again before tomorrow - Merry Christmas, Happy Holidays, and Seasons Greetings (whichever holiday you're celebrating)! I hope your days are full of lots of family, friends, love, and happiness.

Dear Santa:

I'm getting this letter in a bit late, but I'm hoping it's ok because I only want two things this year. I'm keeping it simple and expecting I will get exactly what I ask for. Ok?!

1. Let the kids continue to be awesome. I don't want to ask for them to accomplish things physically or emotionally or anything that puts any pressure on them. I just want them to continue to be the absolutely amazing little people that they are. All three of them, without any idea, are such an inspiration. Rio as the helpful, loving, mature older sister, and the boys and the strong, courageous little fighters. I couldn't possibly be more proud, and truthfully every day I wonder how on earth I made these perfect little children that are such better people than their parents are (don't worry, I'm speaking for Jordan but I know he feels the same). So just let their awesomeness continue please. Don't let anything snub out the incredibly bright light that the three of them shine on the world.

2. Keep us strong. Physically and emotionally, let us all keep going. Sometimes life is hard for the boys, for Rio, and for Jordan and I. Some of our challenges have not been easy to overcome. There are certainly days when Jordan and I don't think we're going to get through another day, and while the kids aren't old enough to verbalize those feelings, I know that sometimes things get awfully heavy for them too. All that said, so far we have managed to survive it all. So all I ask is that as we continue to grow, we continue to meet any obstacles with strength and courage. I'm done expecting for life to suddenly become "fair" and even out with nothing but easy times ahead, so I just hope that we can manage anything else that comes our way.

Like I said, that's it - two measly little requests this year. I'm tempted to ask as a tiny little footnote that you bring back a remaining hockey season, but you know what - I'm over it. Truthfully, I'm enjoying my peaceful winter evenings without the stress of the Canucks.

Thanks Santa, looking forward to your visit tonight. I'll leave you some delicious maple bacon sugar cookies - hopefully that'll sweeten the deal.

The Trousdells



Dear Santa:

I'm directing my Christmas list to you this year - last year and the year before the kids had a hard time getting out to shop so I hoped you could take care of it for us this time.

2011 was quite a year, and not in the greatest way. So let's start with my most important wish for 2012: HEALTH. Please let us all be healthy in body and mind. H-E-A-L-T-H, that's all.

Secondly to health, please let us just be HAPPY. We've done pretty well at overcoming our obstacles and not letting them crush us, but let us start enjoying life without too many more roadblocks. Life is complicated, I know, but let them be every day complications, not life altering ones. Our family is ready, and needing, time to just be together, enjoy each other, and celebrate all the joy that is in our lives. No more sadness and resentment, just happiness and appreciation for all of our many blessings.

As for Asher, I am done asking for him to do specific things like sit or stand - I know he will do everything he can when he is ready, to the best of his ability, with hard work and patience that seems to have no end. A miracle would be nice but what I really wish is that his amazing and inspiring spirit continue to soar despite the challenges he faces.

Please let Nolan walk soon. I am losing my mind with worry because he doesn't! He is so close, he just needs to know he can let go do it on his own. But more importantly, let his menacing love of adventure and mischief continue to drive him and make him the crazy character who keeps us on our toes.

Continue to help Rio's confidence grow. Over the past months we have watched her come out of her shell and flourish. She is bright, funny, and lovely - let her continue to discover in herself all the wonderful things we see in her every day.

For me and Jordan, please let us continue to juggle our life's responsibilities with some grace. Winning the lottery would help, but status quo is good too. We're getting by, keeping our family safe and loved, and that's all I can ask for.

Santa, we're counting on you, and will be waiting on the 24th with a plate of cookies, a newly cleaned chimney, and some empty stockings. Our best to the Mrs. and your elves.

Love, The Trousdell Five

PS - If there's any way you could help the Canucks win the Stanley Cup this year - wow, that would be awesome. If you felt like putting tickets under the tree that would be cool, but I'll take the win from the comfort of my couch if that's all you can do.



Remember last year's Christmas List? That was a harsh one. Things were not so good this time last year. Wow, we have come a long way! Babies are home with us for their first real Christmas; I can't tell you how much that means to us! In the spirit of last year, let's try an updated list for 2010. This year Rio gets included.

My lovely children,

Considering you're all in my sight pretty much 24/7, I figure you haven't made it out shopping this year either. And considering your dad's Christmas shopping took a grand total of about 90 minutes, I'm guessing you didn't send him out to be your errand boy either. Well good thing you're cute, I'll forgive you, but like last year I have a couple of specific requests. Nothing quite so difficult as "BOYS - BREATHE ON YOUR OWN DAMNIT!" but I might test you a little bit.

  • Sit up. Seriously. SIT.UP. Just because you have a giant cloth diaper and an even more giant belly, that is no excuse. Do you know how old you are? SIT. You are so close and it doesn't even faze you to topple over because your enormous head breaks the fall. I promise you, sitting is way more fun that just lying there. Really, it is.
  • Crawl on all fours. The commando crawling is cute, but I'm getting a bit tired of the dragging opening your diaper and covering you in pee. Not so cool.
  • Learn that "dada" actually means daddy. I think you might know that, but somehow you also think it means Mommy, food, Rio and pretty much anything else you want.

  • See the above memo about sitting. Your brother is chubby and lazy and we know he can do it, but you we worry about more. Your not sitting has my mind racing through all sorts of scenarios, like "If he can't sit, he can't walk....", you know, that kind of crazy thinking. If you'd just sit you'll set my mind at ease that you're going to do all those other things you're supposed to do.
  • Crawl. I don't care how, just do it. I know it is entirely possible that one day you might just get up and walk, having skipped crawling all together, but somehow crawling would make me feel a lot better. See the point above about crazy worrying.
  • Don't give up on the hard stuff. I know the arms and legs sometimes don't work as easily as you'd like them to, but you need to stay interested in trying. You are such a hard worker, please don't get frustrated and throw in the towel now. 2011 is going to be a big year and you're going to show lots of progress, I can feel it.

  • Continue to tell me every day that I am your best friend. More importantly, continue to believe it. All too soon you are going to think I am the worst person on the planet, so I will take your unconditional frienship for as long as I can.
  • Lose the attitude. Often, you are sweet and kind and your manners and tone impress me. But sometimes, the way you talk to me leaves me literally speechless. I know it's just because you're four years old and asserting your independence, but wowsa, do your words pack a punch sometimes.
  • Keep learning and amazing us with your brains. Your dad and I surely have a secret war going on inside our heads, trying to take credit for who gave you yours smarts. This one I will not chalk up to you just being a four year old - child you are SMART. The questions you ask and the facts you rattle off absolutely blow my mind. Keep up the good work!

Rio, Asher and Nolan, we love you more than you will ever know. Boys, at this time last year you were barely out of the woods (and not yet 4 lbs!) and Rio, you were a patient 3 year old, staring at your brothers in their "cages". Now you are all thriving and beautiful and you all amaze us every single day. All of you have come through this horrible ordeal strong and brave and overflowing with resilience. I am so incredibly proud to be your mom and could not possibly be blessed with better kids.

The past few days I have found myself getting teary for no reason, and I know it is because this Christmas has really shown me how unbelievably lucky this family is to have each other. Happy, mostly healthy, and very, very loved. Considering where we were a year ago (or even two years ago), my Christmas wishes have definitely come true.


Luckiest mama in the world!



Dear Asher and Nolan,
Things are shaping up around here for Christmas and I'm guessing you haven't had a chance to sneak away and do your shopping. Well we'll forgive you for no presents but don't think you're getting off the hook that easily. I have a list of non-present-type requests that I'm hoping you can both deliver on.

  1. Keep growing stronger and get yourself off that ventilator, preferably by the end of 2009. You're looking better and more like yourself and you're starting to breathe above your set rate. If your gasses are good tomorrow they may think about slowly starting to wean you off the vent. So be good when they do your heel poke and let's have some low CO2. I am encouraging healthy competition here by pointing out that your brother is kind of kicking your ass in the breathing department right now. That's not cool is it? So get on it.
  2. Keep gaining weight. Not the huge gains you've had the past couple days so that they're worried you might just be retaining water, but a reasonable amount, say 30 grams per day. Weighing 4 lbs by the end of 2009 is definitely a possibility if you keep up the good work.
  1. Continue to be a champ on CPAP. I heard a couple of rumours today. One, if your CO2 starts decreasing you may be a candidate for nasal prongs before you know it. Two, when you get on nasal prongs you might be able to leave level 3 and move to level 2. Can we aim for this early January please?
  2. Gain 50 grams before Christmas to double your birth weight. Can you believe it?! Double your birth weight at a whopping 3 lbs 14 oz. If you want to take it one step better, gain 110 grams between now and then to make it to 4 lbs.

Both Of You:
  1. No more middle of the night phonecalls. You've each given us one and scared the living bejeezus out of us so you're done. 
  2. Quit the desats and bradys. QUIT THEM. 
  3. No more infections, bleeds, or drama in general. You've aged me incredibly. Plus I'm really tired of seeing IVs. Nolan, your haircut is ridiculous care of the 2 IV sites in your head. And Asher, once your current site goes you're out of hands so if they can't find good veins in your feet you're about to get your own bad haircut.
  4. Discharge by the end of February. I've pretty much given up the dream of having you out by your due date but there's still 24 more days in February past that, so I'll give you till then. If you also manage to come home at the same time that would be helpful. It will be sad and hard if one of you is left behind (Asher I'm talking to you. Do you want to be there when your brother is home hanging with Rio? I didn't think so).

I think I'll stop there. That's a pretty hefty list but I'm going to go out on a limb and say YOU OWE ME. I'm not getting ahead of myself and asking for anything unattainable or too far in the future so I have confidence you can follow through. And if you don't, I might have to make sure Santa loses the address of the NICU and can't deliver your presents.

Finally to quote Mariah Carey (ugh, I know I know, almost as bad as Celine) singing my favourite modern Christmas song (care of Love Actually, the best Christmas movie EVER):

I don't want a lot for Christmas
There is just one thing I need
I don't care about the presents
Underneath the Christmas Tree
I just want you for my own
More than you will ever know
Make my wish come true
All I want for Christmas is you

[December 2014: The only note worthy of adding to this entire post is that I still sing this song to the boys and this year they understand the significance of it. And I still cry nearly every time I sing it).

Lots of love, oh and Merry Christmas!

Tuesday, December 16, 2014

A Christmas Card

Every year I take pride in the fact that I send Christmas cards. I love Christmas cards. Sending them, receiving them, addressing them, and mailing them. I love it all.

But this year I didn't have it in me. So this is what you get instead - a virtual Christmas card that's signed, sealed and delivered as soon as I hit "publish" on this post:


With the promise that tangible, paper, possibly even creative, Christmas cards will be coming your way again next year.

Friday, December 12, 2014

Tales from the Vault - Broken Baby, Broken Dreams

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.

I haven't done a "Tales from the Vault" for a while, but in light of the anniversary of both this piece being published, and the event itself happening, I thought it was a good time to bring back. Sad, and a bit harsh, as it is, I am more proud of this piece of writing than of anything else I've ever written. It was originally published on my blog in December 2011, two years after the loss occurred, and had been in the process of being written and re-written for over a year. You can also see it published here, in Exhale Literary Magazine.


Broken Baby, Broken Dreams

The minutes are ticking by, slowly. It's just before 3 am and the sedatives have done nothing to calm my mind. Beside me, my husband's chest rises and falls rhythmically and I resent his ability to sleep so soundly. Listening closely, I can faintly hear the whistling snore of my two year old daughter slumbering peacefully down the hall. I roll over and our cat leaps off the bed, creaking a floorboard when he lands. The house is otherwise silent and I am alone with my thoughts.

Four days ago, a routine ultrasound showed that our baby would not survive past birth or even the remainder of this pregnancy. I saw what the doctor was pointing to on the screen: no amniotic fluid, no urine in the bladder, no notable blood vessels heading in that direction. An otherwise perfect baby with one major flaw: no kidneys.

"Not viable", the doctor stoically explained.

I heard the words, I processed them even, but I didn't believe them. I wondered how he had the ability to clearly explain all of the medical facts while remaining so sympathetic and kind. I admired and appreciated his bedside manner. I let my thoughts wander for a moment, then the reality of his words started to set in and everything went grey. I cried, but the tears didn't seem enough for the magnitude of the situation.

I couldn't bear to look at my husband. If I did, I would have to accept that this was real. I turned to see his head in his hands. Yes, apparently this was actually happening. How?

The doctor began to talk about our options but I didn't need time to deliberate. Although we had until twenty-two weeks gestation, two weeks from now, to contemplate, I looked at my husband and knew without speaking that he would support me: surgery as opposed to induction, and as soon as possible. I wanted it over quickly and the pain to be dulled.

"Some need the closure of meeting and holding their baby", the doctor carefully cautioned us.

"I do not", I told him, knowing I would need to live with this decision for the rest of my life.

"She'll take good care of you, she's the best there is", he replied, speaking of his colleague who would perform the procedure.

I nodded in response through blinding tears as he compassionately patted my hand. The arrangements were made.

Now, lying in bed the night before surgery, I'm not sure of anything. Have I made the right choice? Am I being a coward, avoiding labour? Will my little one know, without ever being held in my arms, how much she is loved and wanted? I tell myself I'm going to get through this, but I don't believe my own words. I cannot bear the thought of it all being over, nor can I bear the slow passage of time until it is. "This isn't fair" and "why me?" play on repeat in my mind.

My back is aching and my throat is dry from crying so I reach for my water next to the bed. As I turn I feel a series of kicks. I cringe; the baby is awake. I put the heel of my hand on my belly, pressing down hard. I silently will the movement to stop. The gentle flutters that brought so much excitement and promise days ago bring only torment now - a painful reminder of the life, and the dreams, being taken from me.

The next afternoon it's done. A mother's confused body, two tiny footprints, and later ashes are all that remain. A daughter and hopes for our future, vanished.

Monday, December 8, 2014

Mary's Girl Child

A long time ago in Bethlehem Trail BC
So the holy bible say,
Mary's Betty's boy girl child Jesus Christ Tracey Lyn
Was born on Christmas a September Day

Confused? You probably should be.

Friends, at the risk of sounding completely blasphemous, many moons ago, yours truly was the sweet baby Jesus.

Oh yes I was.

No matter that I was a girl. Or three months old. I worked the live nativity circuit in December 1975. And I was much revered. Case in point:

My debut, at my grandfather's seniors home. Have you seen anything cuter...

...than that angel ?? (don't mind the look of sheer terror on my face).

I love the blue blanket driving home the point I am actually a boy.

My second performance came a few days later at midnight mass at our church. Arguably, I'm with a more age appropriate Mary and Joseph, although for historical accuracy Joseph probably should have taken the tinted glasses off. Who are you trying to kid Joseph?

Midnight mass! My parents not only had no problem passing their daughter off as Jesus, but also at midnight! Shouldn't a three month old baby be sleeping at midnight?! Evidently not if she has an important theatrical performance to star in!

How I did not go on to be a celebrity I will never know. But I do know that in later years, when it came time for our class to star in the Christmas pageant at school, mannnn was I jealous my best friend got the role of Mary. I guess my time in the Christmas pageant spotlight really was over. I did have a good run as the star of the show though.

Come to think of it - I believe there is a live Nativity here in town. Maybe I should see if they need any new cast members next year?!

Friday, December 5, 2014

Four Before Their Time

A few months back I was asked to review a book about micro-preemies. I was a bit nervous because I'd never reviewed a book before, but God knows I've read enough to have a pretty good opinion. I promptly read the book, underlined a few things, and then it got put away while we moved from my sister's into our suite, into upstairs, and then started unpacking and actually LIVING. So now it's finally time to pull it out and say a few words!

The book, Four Before Their Time, is the story of quadruplet micro preemies born at 24 weeks. It is written by their Grandfather, Timothy Spillane, and vividly details the quads' NICU journey.

Now I've got to say I was a little skeptical of how well a Grandpa would be able to write this story. I mean he's just the Grandpa, right? (No offense, Timothy!). But how much of this could the Grandpa possibly understand, much less enough to write an entire book about it?

A lot, I'll tell you, he understood a lot. I'm going to go out on a limb and say he understood a lot more than some parents even understand.

The time in the NICU is incredibly complicated (yes - bold, underlined, and italics worthy it's so complicated). You are feeling every single emotion under the sun. You are grieving the life you planned for your kids, while also desperately trying to celebrate the life they are living, minute by minute. You are scared, confused, and overwhelmed. It is a small miracle any amount of information sinks in. I, personally, recorded absolutely everything my twins went through every time I talked to the doctors. I was in such a fog I was scared I would get the details wrong and it was important that I fully understood everything about my boys.

The author and his family obviously felt the same need to keep track of every ounce of information, because no details were missed. He captured it all in a way that was understandable for the lay person, yet all of the medical accuracy also remained.

And it's not only the technical descriptions, but the emotional ramifications that are even harder to put into words, yet he does, with eloquence. For instance:

"Her role as mother of the babies was essentially suspended once the babies had been taken from her...when it came to her newborn children she really had no other role than to be their insurance sponsor. In fact, whether she lived or died in the SICU seemed to have little to do with how well the babies would do in their first hours or days outside her womb".

Here he's speaking about his daughter, the mother of the babies, recovering in the surgical ICU from her own medical emergency. At this critical point in the babies' lives, however, their mother's survival has zero impact on how her babies are going to fare. Reading that literally took my breath away because I had always known, but had never seen it in front of me in print like that. When your babies are that sick and that small and an entire team of medical staff and machines are taking care of them, their mother really has no role in their survival. That is an incredibly sad and harsh - but true - reality. And as much as it pained me to read that, it felt good to know that someone actually understood what it was like to feel so completely useless.

And now, like I said earlier about grieving while trying to feel some semblance of joy at the notion you've just given birth, more of his words:

"She had suffered a terrible loss. The pain she felt was as though someone very close to her had died, and while she was overwhelmed with grief, she was confused as to why. No one had died. Still she felt a gnawing ache, a stabbing pain that dug deeply into her, and she could not find the thing that had pierced her, let alone begin pulling it out. It wasn't for lack of trying. She desperately wanted to feel joy. But any notion that something should be celebrated - the birth of her children - was offset by the sense of grief that followed having her pregnancy cut short...Try as she might to convince herself she should feel joyful, to persuade herself - in spite of all that had transpired - that there were still things she should be thankful for, she could not. She was being crushed by the looming prospect of even greater loss and grief. It was so hard for her to hold onto hope".

You said it, Timothy! I wanted to be hopeful. I wanted to be positive. Every day my boys lived was a day to be celebrated. But every day also brought the potential of more complications. And when you have multiple babies facing these challenges - two was hard enough, much less four - it is a never ending series of "lows" between seemingly very short lived "highs". And again, being the mom - who should be the most important person, central to her baby(s) surviving and thriving - there is much grief associated with having no real role.

I could go on quoting but I won't because I risk this being far too long and everyone losing interest. But I will touch on one more thing that is pretty key to this book: Faith.

Now I will admit, when I started reading it and the author began mentioning God and his Christian faith, I wasn't entirely sure what to make of it. But I respected his faith and as I kept reading, I actually began to make a real connection to it. I realized that for this author it was his Christian faith that kept him going, but for most anyone living through such a stressful and unknown journey, some sort of faith is needed to keep going - something to believe in to get through the day.

For some people it's faith in God, or some sort of higher power. For others, it's faith in science and the medicine and machinery that keeps the babies alive. For others still, it's faith in their support system that no matter what happens, they are going to get through this with the help of others. I think for me, it was my faith in all of the above. So whether you're Christian or not, I think anyone who has been through an experience like this can relate to needing something to hold on to to let you know you're not alone in all of it. Faith is a very central theme in this book, and for good reason.

Anyway, the long and short of this review (ok just long, sorry I got a bit carried away) is that for anyone who has been through the harrowing NICU journey with a micro preemie (or two or four!) this is a very well-written and relatable read. To find out more, check out the book's website here and Facebook page here.

Tuesday, December 2, 2014

Butterfly Gardens

I wrote this post a while back. September to be exact. But then it sat in my drafts and I forgot about it. Until today.


The Butterfly Gardens is a regular stop for me and the kids. It's a jaunt from our house, but it's an easy activity that involves pushing Asher on a flat surface and letting Nolan roam with a little bit of freedom, all while checking out butterflies up close. Sometimes we go and everyone is bored and antsy and other times they're more excited. It always amazes me how they are generally thrilled to see the same flamingoes and fish over and over.

For my birthday, Jordan was hard at work on the house so I needed to do something entertaining with the kids. Butterfly Gardens (followed by ice cream) was the plan. I'm not sure if the butterflies knew it was my birthday or if I just put out some good vibes but man oh man was it a good visit. And thankfully for once I was quick on the draw with photos:

Freshly cracked from its chrysalis, it walked right onto my hand....

Then I promptly placed it onto Asher's head...

Before it fluttered for a bit and flew away.

Next came an obliging parrot who walked up my arm. 

A mother's love right there people. I am TERRIFIED (of most birds evidently) but I did that for the kids because they were too scared to do it themselves!

Rio desperate to have a butterfly step onto her hands. No dice, but not for lack of trying.

Nols eyeing up the bananas. 

Twin tree frogs up close and personal.

And you know what the best part of the visit was? I got to nerd out and show the butterfly experts the photo I took the other night when I stumbled upon this little guy, coolest caterpillar ever!


Oh now I see why it sat in my drafts - because it came to an abrupt end and I didn't know how to finish it. And I still don't. But it's full of cute photos so I wanted to share, no ending and all!

Thursday, November 27, 2014

Selfie Series - Part 2

Before I gave you "Asher, the series of selfies". Now I present Nolan (a small sampling). And I might note while some of Asher's were fluke, I guarantee every one of this little ham's are posed:

This kid knows his way around my phone. Notice he even changes the color of the photos?! "Mama I just want to look at pictures" turns into 100 shots of Nolan's face. Good thing he's so cute.

Sunday, November 23, 2014

This Is Asher's Brain on Drugs

Remember those commercials (in the 80s?) of an egg "This is your brain" and then a fried egg "This is your brain on drugs", trying to illustrate the point that drugs fry your brain? Please tell me someone remembers those?! Well if in the original commercial it's an egg vs. a fried egg then in Asher's case it's an egg vs. a cute little fluffy chicken hatching from an egg. That's how good those drugs are.

No that's not it at all. I don't know what I'm talking about. Ignore that weirdly misguided metaphor. All of that said, Asher's on drugs. I think I have alluded to him trying drug therapy here and there, but I've never elaborated on it. Basically it's been in the works for months (almost a year actually) and now it's finally underway. So let me explain.

Back when we went to Shriner's last January, our orthopedic surgeon there floated the idea of putting Asher on medication - specifically Baclofen. Baclofen is traditionally used in children with spastic CP, which Asher does not have; however, they've also tended to see results in children with athetoid/dyskinetic/dystonic/hypotonic (whatever we're calling Asher's type of CP these days). They sent us home with a ton of literature and some thinking to do.

Fast forward then to the summer. We had another Shriner's visit on the horizon, as well as check-ins with our orthopedic surgeon and neurologist in Victoria. We saw the neurologist here first and while she was totally on board with Baclofen at first, the more she started talking the more she thought Asher might benefit from Sinemet - or levodopa/carbidopa - used in Parkinson's patients. We left her with even more thinking to do because now another drug had been introduced into the equation.

So back to Shriner's we went. We met a new neurologist there, and while she respected our Victoria neuro's opinion, she personally didn't have a lot of experience with Sinemet so she was suggesting Baclofen. Definitely Baclofen.

So now we've got two votes Baclofen, one vote Sinemet, with the all-important parents' vote undecided. Oy.

Enter our orthopedic surgeon here in town. Can you guess what he suggested? Of course Sinemet because why wouldn't we have 2 doctors' votes per side? So now we lucky parents are left to be the tie breakers. Talk about a decision.

So we discussed, and researched, and wavered, and discussed some more. We saw the benefits of Baclofen and were able to get concrete data on how it has worked numerous times on kids with CP - but not necessarily Asher's type of CP. We also saw the potential benefits of Sinemet, although there was little to no research on the usage of the drug on anyone but adults with Parkinsons. Where to go now?

Well I have an awesome circle of parents whose kids have CP and I turned to them for advice. And then I consulted my life long friend who happens to be a pharmacist.  We had a very in-depth, thoughtful conversation that included pros, cons, side effects, and our overall rationale for putting Asher on meds to begin with.

Which I guess I should pause to explain. The theory behind putting Asher on medication is to get some of his movements under control. Not to expect a miracle and suddenly have him jumping out of his chair and walking, but to help improve the quality of his movement. He is not in pain and there is no real need for any drug - all we're looking for is quality here. So in that respect it made that part of the decision making easy: If the drug works, he stays on it; if it doesn't work, or there's side effects, he goes off. No question.

Anyway back to the story at hand. Armed with a ton of research, we decided for a multitude of reasons to try Sinemet first, even though there was far less evidence aside from anecdotal. I've already bored you for long enough so I'll spare you those details, but once our decision was made we felt good about it. Well as good as you possibly can knowing you are putting your small child on drugs that alter the chemicals in his brain.

So it was a slow introduction. A very small dose the first week followed by increasing increments over four weeks, watching for both benefits and side effects. I'll start first by saying the side effects have been negligible, if at all, so we've felt confident to continue. The benefits however, were not quite as obvious to spot at first.

If you asked me what I saw at home in the way of changes, I'd say very little. His self feeding was always pretty good and in terms of other self care and mobility, he still needs a lot of help. Because we have been so busy at home lately I haven't done a lot of fine motor stuff with him so have had no real measuring stick for improvement. His EA however, had a different story from school. She has been updating me all along, but when I saw it in print (I requested an email to show the neurologist her findings) I was pretty stunned to see it all laid out:

"He has less uncontrolled jerky movements than when we first started kindergarten. With almost all fine motor activities I have noticed that he has far more control. So when writing or tracing letters he can now complete a full letter or tracing before his arm jerks away. At the beginning of the year I would support his elbow and restrict allowable movement but I am able to stabilize the paper only and he is doing this independently with only his arm straps. He is also able to keep his tracing within two lines without assistance for the width of a sheet of paper. Coloring and drawing has also improved.

His right hand also seems far more flexible with reduced contractions. He is now able to bring it across his body and forward to push desired objects for his left hand to reach. At first his right hand was often contracted backwards when he was engaged in any activities. He can also reach his right hand into the sink for hand washing with little or no assistance.

I have noticed more core stability than before meds. I find that I can provide minimal support while sitting at the carpet, criss cross, and he is able to stabilize for far longer than he did before the meds. Today, it was about 20 secs. after yoga in the afternoon which I felt was great as it is end of week and afternoon. He seems far less "wobbly" and able to maintain a more typical sitting position. Also when we are doing any standing in the classroom I have found that I need to support his upper torso less than before. He is better able to support his upper torso with only hip and leg (straightening) support.

He is also able to receive and hold onto objects better in his left hand. From peers during play activities as well as holding work while heading to a table for completion."

So I'd say there's no arguing that she sees some substantial changes in him??! And if her words weren't enough - how about some photographic evidence from school:

Exhibit A: Pre-printing

At the start of the year with his EA holding his arm at the elbow

On medication, with no support besides neoprene armstraps and his EA holding his paper still

Exhibit B - Printing letters

At the start of the year, with his EA holding his arm at the elbow

On medication, with no support besides neoprene armstraps and his EA holding his paper still

Isn't that remarkable?! I am so proud of him and amazed by the improvements!! Now truth be told, I really wish we could see more practical changes at home too (although I did just see him complete a puzzle completely on his own (no one holding the puzzle, supporting his arm, and no arm straps on) which he's never been able to do before).  Buuuut, and this is an important but, if the quality of his school work improves that is a big and important gain. Not because I am remotely concerned about how he is fairing at school - but because I am concerned about how much physical effort it takes him to complete tasks. If medication can help him to exude less effort while creating the same, or ideally improved, output, then that is a HUGE win.

We saw the neurologist Friday and we now have a three month prescription for a slightly higher dose. As from the beginning, if we see side effects we will cut the dose or take him off it all together but at this point there is no reason to think that's going to happen. And at every appointment we will re-evaluate how we want to go forward.

But for now, these small changes are really big. Huge in fact. 

Next up botox. But that's a whole other post. 

Tuesday, November 18, 2014

What Would a Father Give?

This guy, using his good looks for a great cause.

Keep an eye out for him in the Times Colonist November 18 (today!) and 27, and December 13. Also, he'll be on BC Transit buses so commuters please snap a picture and send to us if you see one!