Monday, April 28, 2014

Swingers

Asher loves to swing. Loves it. Really, what kid doesn't (ok well actually Rio was terrified of swings til she was around 5), but I think in Asher's case it is especially 'freeing'. I can only imagine how good it must feel to move so easily, without having to do any work. Jordan built the kids a killer swingset two years ago and we've always had a swing for Asher, but each summer we've needed to upgrade.

First there was the baby swing that I researched the heck out of and found one that looked excellent and good up to 55 lbs. Well we got it and I quickly realized it may hold 55 lbs, but a 55 pounder that can move their legs on command is a lot different than a [still much smaller than 55 pound] kid who can't. It became impossible to get him in and out, so we knew we'd need to figure something else out.

Then last summer we took a kids' bucket swing and rigged up a strap that kept Asher safely in. Rio fit in that swing so theoretically it could have lasted Asher a long time. But once again, when you are lifting a body that is sometimes stiff and other times floppy, it makes getting in and out of a makeshift swing more difficult. So back to the drawing board.

After some brainstorming, I realized that as much as Jordan and I take pride in modifying every day items to meet Asher's needs, sometimes we need to turn to actual special needs products. The problem with that, however, is a big one: Price. Always so expense. Like every time I tell you something for Asher is pricey, I want you to take a price that you think is reasonable and quadruple it. That's likely what we pay.

Anyway, fast forward to this spring. My mind wasn't really on the swing set yet, but after I ordered the Upsee care of our very generous benefactors, there was still some excess money to spend. Unsure of what I'd spend it on, I stumbled upon a thread about swings in an online special needs group that very same day. It was meant to be! Several people shared links to their swings and I was familiar with all of them - mostly because they were so far out of our price range. Then one mom shared a link to a product I'd never seen before and after some careful questioning about its quality (because it was almost $200 cheaper than the next cheapest I'd seen) she told me to order it and I wouldn't regret it. Well she was right. Here's the evidence for you to see for yourself:



And who am I trying to kid - photos aren't nearly as good as video because you can't hear Asher's excitement...


Backyard time used to be a bit challenging for me, trying to find ways to keep Asher entertained without constantly carrying him, while the other two moved about. Thanks to this swing, I don't think we'll have any trouble this summer or for several summers going forward! This swing is good to 110 lbs (with tons of adjustable straps on the harness), and while we may not get that much life out of it, I feel that this one is going to last. 

Tuesday, April 22, 2014

Tales from the Vault - Guest Blogger: Rio

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.



This post was originally published in April 2010, not long after the boys came home from the hospital. Probably about time for Rio to guest blog again?!

---

Author: Rio Elisabeth Trousdell
Age: Almost 4. 
Profession: Big Sister. 
Interests: Playing, crafts, music, gardening, eating, and of course, big sistering.



This is a word for word transcription of my conversation with Rio when I told her I wanted her to talk about her brothers for our friends and family. Honestly, you couldn't make this cuteness up if you tried....

T: Ok Rio, we're going to talk about the brothers and mommy's going to type this all out to tell everyone what you have to say. So what do you want to say about them?
R: The brothers love me.

T: And?
R: I love them.

T: And? What's it like to be a big sister?
R: Take care of the brothers.

T: What do you do?
R: We feed them, and ummm put them to bed, and lie them on their tummy.

T: Ok. What else do we do?
R: We umm, give them soothers when they're crying.

T: That's right.
R: (Laughs at Nolan). Did you hear that sweetie? (to Nolan). Zoom zoom zoom, we're going to the moon. Ya, ya, ya, ya ya.

T: And do you like to make funny faces at them?
R: (Laughs and nods)

T: And do you like to kiss them?
R: (Nods)

T: Where's your favourite place to kiss them?
R: In the living room.

T: I meant on their body!
R: On their tummy.

T: Now, how do you tell them apart? How do you tell who's Asher and who's Nolan?
R: (Points to Nolan) He's Nolan. (Points towards the bedroom). And that's Asher.

T: How do you know though, when you look at them?
R: Because they're my favourite kids!

T: What's the difference though? When you look at one baby - what do you notice about Asher?
R: Cause his tummy is big and fat (his umbilical hernia).

T: That's right. Is there anything you notice about Nolan?
R: His tummy is littler. Little.

T: Do you have anything else you want to say?
R: No. Let's spell things up!

There you have it, the lovely and talented Miss Rio. If anyone wants to be a guest blogger yourself, I'd love it. Send me an email! [Update April 2014 - that offer still stands!]

Wednesday, April 16, 2014

He Just Gets It

I start to walk slowly towards Nolan with a mischievous face. "What are you doing?" he asks, unsure of what's going on.

"I'm just…trying… (as Nolan skulks away) ...to tickle you!!".

Nolan screams, I laugh, and he quickly moves away from me. And so begins the game of cat and mouse. Our house, like many 1950s houses (or at least like the 1950s house I grew up in) has the staircase right in the middle of the house, meaning it leaves a continuous square to run around it - perfect for chasing. When I was a kid I would chase my dog around the stairs for laps, and often Nolan and I do the same.

Each time I double back and catch Nolan in the opposite direction he was expecting, Asher squeals with delight. He is as happy as if I'm chasing him.

"Mama, will you chase me?" he asks with a huge grin.



I pause, but only to gather my thoughts. Saying something like "I can't chase you Asher" is not an option, but things are complicated by the fact that I am the only adult home, meaning I'd have to do both the pushing and the chasing. Just as I quickly realize Nolan can probably push Asher while I chase both of them, Asher pipes up again, with just as big a smile on his face.

"Mama, I MEAN, can you push me and we both chase Nolan?".

I do, immediately, so as to not lose the momentum of the fun we're having. But while I push Asher and both boys continue to laugh, all I can think of is he just gets it.

Maybe when he first asked me to chase him, he forgot for a split second that he couldn't get up and run away from me. But if that was the case, he quickly figured out another option.

Or…maybe he really didn't mean to ask to be chased in the first place, and he did just want to chase Nolan.

Whatever the reason, his rephrasing of the request was not accompanied by sadness. There was no feeling sorry for himself. Chasing Nolan, as opposed to being chased himself, was not a consolation prize. It's just the way it is. Asher needing mama to push his chair to chase Nolan is his normal, nothing sad about it.

Sometimes I question why Asher doesn't ask much (if at all) about his disability, and I wonder if we should be talking more about it with him. And then something like this happens and I trust in the fact that Asher is an enlightened soul who - let me repeat - just gets it. 

The wisdom that lies innately within this boy astounds me sometimes. I'm so glad I have him to look up to.

Monday, April 14, 2014

Introducing Our New Van!

For those of you who haven't met her yet, we introduce our new van!


Isn't she pretty? A 2014 Dodge Caravan with rear entry wheelchair access. But before I give you all the details and photos about the van itself, I should probably tell you how we got it.

No you know what, I just tried to but I deleted it because it's a really long, long story. Also, it involved a lot of stress, and trying to even type it out makes me re-live that stress. So here's what I'll say instead: Thank you Giving in Action, who still managed to find us some funds despite no new allocation of money from the BC Government (shame on you BC Gov but that's a whole other conversation). Thank you Variety Club of BC and Bear Essentials for your contributions. Thank you to us for finding a way to contribute the sizable remainder. Thank you to my friends who had to listen to me stress and cry about all of this. Just thank you to the universe for all of this aligning and making this van ours. 

Ok so are you ready for some more photos then?

First up - from the rear where Asher will enter. The van is boosted up a bit in the back to allow a ramp to fold out when the back door is open (Sidewinder is the company who converts the van):


Here we have it with the ramp folded up:


And here it is with the ramp extended. It literally unfolds (manually) and weighs basically nothing. Nolan can unfold it himself if that tells you anything:


Here we are looking in from the back when the ramp is down. All the straps are tie downs that attach Asher's chair to the floor in four places. Take a looksy on the far left (directly across the car from the spare tire) and that's a third row bench seat that conveniently flips out of the way when not in use:


Here's Asher wheeled in and tied down, between the middle row of seats with Nolan and Rio on either side of him. He also has a giant seatbelt in addition to the tie downs. Safety first!:


And finally, here we are with the back bench folded down, allowing for two more passengers to sit behind the second row even when Asher is in there:


Oh look, here's the happy family on their first drive all together:


And more importantly, here is the star of the show, feeling pretty special:


So pleased with himself. Can you blame him?

We are so excited for this van for about a million reasons. First of all, it is the safest way for Jordan and (especially) me to transport Asher's chair. Although it weighs less than 100 lbs, I do SO MUCH lifting in a day that even eliminating one of those lifts into the car is huge for me. But going forward, Asher is going to have a 300 lb power chair along with his large framed self, and lifting will no longer be an option.

Additional to all the practical accessibility advantages, isn't it really just a smokin' hot new van? Jordan and I between us have owned exactly one brand new vehicle in our lives besides this one, so it is pretty fun to have such a nice car. And suddenly seven seats plus the additional cargo space to boot? Oh my goodness it's heavenly. Scroll back up and see how much room we have behind Asher. TONS. In our other van we had to remove a seat to even get Asher's chair in the back, taking it down to a five seater with no other passengers. Once the chair was in there was basically room for nothing else:


(That's only the base of it shown - the seat is the big part and it's not in there). Throw in a couple bags of groceries behind it and we were maxed out.

Now we just need to do some learning. At the moment it takes both of us together about 10 minutes to load Asher in as we're not used to how it all works. But I'm sure with a little practice we'll figure out the best order to do things in and shortcuts to speed up the process. Good thing Asher is SO patient!

We feel so, so, so blessed that we have this awesome new vehicle that will continue to meet our family's needs in the future. Next up - a house that's equally as functional as the car. Coming soon - renos start in July 2014...stay tuned! In the mean time, we have a 12 year old Kia minivan to sell. Any takers out there? Anyone?

Thursday, April 10, 2014

Us In the Press

As you may remember, our family was featured in the Children's Foundation of Vancouver Island's winter donation campaign, to much success. There were many mail outs to donors, as well as a feature on the website. To follow up, we were also in their quarterly newsletter, featured below:


Unrelated, Asher and I (my words, his picture) were also recently featured in a feature on our seating clinic in Island Health magazine (available all over the island for any friends and family who want to see it): 


Next up, the children's foundation is featuring our family in as part of a video series they are making. I'm most nervous to see that (there's something far more intense about seeing yourself in video than photo) but I'll be sure to share when it comes out!

While in some ways it makes me feel a bit weird putting our story out there, it also feels good to give back. And besides, our kids are seriously cute and inspirational, right? May as well show them off when people ask us to?! 

Monday, April 7, 2014

UpSee!

As those of you who follow the blog on Facebook know, I have been very excited about a new product that is being launched - the Firefly UpSee (be sure to click on the link if this is the first you've seen of it, although I caution you it may not load if the site remains this busy).

When I first heard about the product a couple of weeks ago, I was thrilled. A chance for Asher to walk with us without his giant gait trainer, or without us hunched over, killing our backs with not enough hands to support him? Yes please! Sign me up!

So sign up was what I did - for a webinar that is. That was the first step before you found out any information about the product. Several days passed and the price was leaked ($489 USD - yikes!) but that didn't put a damper on my excitement. We'd come up with the money if the product looked to be a fit.

The night before watching the webinar (I keep wanting to call it an infomercial!) my good friend phoned me with a BIG surprise. Knowing I would never want to ask for help, she took it upon herself to fundraise enough (and then some) for us to buy it. She didn't canvass close friends of ours, she canvassed close friends of hers. Aside from a couple of friends in common, most of the people who contributed are acquaintances, and a few of them are complete strangers. To say we are overwhelmed, thankful, and humbled, is the understatement of the year. The thing is these people saw the promise for Asher in this product too, and were happy to help. We are not alone in our hopes for this, and we are so, so grateful for the support.

The webinar was amazingly inspiring. I watched, through tears, while every parent who had trialled it with their child explained how life changing it was for their entire family.

Today, finally, my "Christmas day" arrived and the product was available to order. I was online bright and early, ready to purchase, but the site was down due to overwhelming demand. It was as if I woke up Christmas morning, only to find a note at the bottom of the chimney saying "Sorry, few chimneys were a little tighter than I expected and one of the reindeer broke a foot on a bad landing. We weren't expecting these delays but we're doing our best to be back at it as quickly as possible. Be there as soon as I can. Love, Santa". Ugh. Waiting is not my forte.

Eventually it was ordered, more than 6 hours after the official launch time and after a whole lot of refreshing multiple web browser platforms on two computers. Originally they said it will be up to 12 weeks until it arrives, but now I'm worried it will be even longer given the unprecedented demand. So I will have to try to stop thinking about it because either way that's a loooong time to wait for something so exciting.

The possibilities for all of us are endless. Asher will be able to walk with us. Nolan will be able to run with us. The boys will be able to walk together, hand in hand. Oh Upsee, I can't wait for you to change our lives too.

Wednesday, April 2, 2014

Coming Home

Today is four years since we brought the boys home from the hospital after five months in the NICU. Asher was five times his birth weight when he was discharged, and Nolan six times. It took Rio til she was more than five years old to be six times her birth weight - think about that and realize the magnitude of just how much growing they did in five months.



152 long, long days they were in the hospital. When I think back to that time I can't believe we all survived - but somehow we did. How did we? I will never know, yet at the same time I'm always shocked by how distant those memories have become. I have friends whose kids are in and out of the hospital and I always think "How do they do it?" and then I realize "Wait a minute. YOU did it". It's all very surreal.

I laid in bed last night thinking of the last few days preceding homecoming. For four days we knew the boys would be coming home (longer than most families who often only get 24 hours) but it was a production so we needed planning. There were carseat tests and rooming in, and a last minute flurry of activity to get a house ready. I know, we had five months to prepare for homecoming, you'd think we would have been ready on the home front. But in fact it was just the opposite - not knowing if you are ever actually going to bring one, much less both, home makes you wait until it's an actual reality before you get your hopes up. It was a time of much excitement, yet also a bit of fear about how we were going to take care of these still very fragile babies - not to mention the simple fact that suddenly we were going from one child to three. Twins! That was some work in itself!


Although today is not their real birthday, it is almost more important to me. The day of their actual birth will always bring back traumatic memories, but today brings nothing but joy, and a reminder of one of the happiest days of our lives. Together at last.

The past four years have been a wild ride, and will likely continue to be. But as long as we're all together, we'll make it. When you are blessed to have that perspective, care of facing an alternate reality where you weren't all together, you can face anything. Happy Homecoming to our miracles!

Action shot!