Monday, June 30, 2014

It's Really Happening

Things have been quiet on the blog front, I realize. That's because things have been anything but quiet at home. There's a good reason why: Our renovation. I'm finally spilling the beans because it's starting this week!

To back track a bit, I've been mentioning it here and there. "When we do the renos", or "When the house is wheelchair accessible" or something along those lines. I've been giving hints about it, but no details. For good reason - I've never really believed it would happen.

The process has been ongoing for a year. Last July we found out about potential grant money for an accessible home reno (and van), and that is where it all started. We planned, we designed, we agreed, we disagreed, we stressed, we argued, we were excited, we were scared. And on and on and on it went for a solid five months until our house was designed and the application for the grant was in. I felt good about our application and our chances for getting the grant, not to mention the killer house we had designed allowing independence and accessibility for Asher, but yet I still didn't really believe it would happen.

And then we waited for a decision, and then we stressed some more. And the grant money was available, and then it wasn't, and then it was less than we had planned on and then it was more. Finally, we had an answer about the grant, but I still didn't really believe it would happen.

And then we dealt with figuring out the finances and how we were actually going to pay for it [the majority of the cost, not covered by the grant]. And guess what? I stressed some more. But eventually we got it all sorted and a plan was in place, although I still didn't really believe it would happen.

And then we had conversation after conversation after conversation with our contractor/close friend about how it was all going to go down. Applications for permits even went in. Crews and trades were secured. But as much as all signs pointed to it happening, I still didn't really believe it would happen.

And then we started picking out finishings and paint and everything that's needed to complete our forever home. As much as Jordan and I nailed down our style and exactly what we wanted our house to look like when it was complete, and as excited as we were for this beautiful "new" home, I still didn't really believe it would happen.

But guess what friends? Despite all the stress and worrying to the contrary - it's really happening!



The house plans on my kitchen table and the permit applications about to be approved assure me of that fact. Our house is going to be torn apart. Our yard is going to be dug up. Rooms we've lived in for seven years will vanish and new layouts and a whole new addition will take their place. We're going to be uprooted for the foreseeable future while everything we know and love (or hate) about this house is altered. I won't give you too many details because there's not enough time or words to explain everything we're doing. I'll just say that short of tearing down the house and re-building from the ground up, we're going through a massive transformation. 

The next several months will likely be highly stressful but I am trying not to focus on that, and instead enjoy it as it's happening. This is all for the greater good. At the end of this very long process we will have a home that is beautiful and everything we could ask for - but most importantly, highly functional for everyone - including Asher, now and in the long term.

So now it's time to buckle up and put our hard hats and steel toed boots on (metaphorically for me and the kids; literally for Jordan). I keep pinching myself because it's been planned for so long and now the time is finally here. Well almost here. Before that, we have an entire house to pack up and store before the demolition begins. 

I still can't believe it. But it's actually really happening!

Tuesday, June 24, 2014

Bliss

This past weekend we went away to celebrate our tenth wedding anniversary with friends. Without kids. Let me repeat: WITHOUT KIDS.

It was glorious. Magical. Soul refreshing. Hilarious. Everything we'd hope it would be. We are thankful to have good friends to have shared it with.

Here's a few of my favourite photos...for more, check out my Facebook album here. 





Thursday, June 19, 2014

Ten Years

Ten years ago today, Jordan and I were married. What a milestone. A decade! (not to mention another five before that!). It's safe to say that in the past ten years we've been through some tough times that may have broken other couples. But not us. Because amongst the "in bad times" there's also been an incredible amount of "in good times" - and we've learned to find blessings in everything else.

On that beautiful, hot day in June 2004 we had the whole world ahead of us and great plans for the future. We were young and carefree, having no idea what that future would entail. I married the man of my dreams, and even though some of those dreams changed vastly, we are stronger - both together and separately - than we were then.

Last night, reminiscing together, I gave Jordan a scenario: It's the night before our wedding and someone sits us down and lists everything our two naive souls are going to encounter in the first ten years of marriage. There is no explanation of the happy times amongst the chaos, no assurance that we will find silver linings in the greyest clouds - just a laundry list of challenges. Then we're given the choice to cut and run now, or stick it out. Jordan's response to that hypothetical scenario was simple and without hesitation: "I'd have stayed". That says it all, doesn't it? That's why we're together and stronger than ever.

To quote part of our wedding ceremony:

"May the challenges of your life together be met with courage and optimism. May you learn from your failures and grow in your achievements. May life bless you with children, friends and family. May you face pain and trouble with a strong, but light heart, and may you always share your joy and laughter with others."

I am immensely proud of how we've honoured that advice. Although each of us is far from perfect, and our marriage is far from perfect, we chose each other for a reason. As we enter the next decade of our marriage, we once again don't know what's in store. But we will face whatever it is together. 




We're off tomorrow to celebrate for the weekend with friends at the place we got married. Here's hoping for warm sun, cool drinks, some sleep (we're all going without kids) and a lot of laughter. I can't think of a better way to usher in the next ten years.


Tuesday, June 17, 2014

Snug as a Bug - In Ten Steps

Just recently I said Jordan and I take pride in making things to help Asher out with every day activities that need modifications. Well I decided to listen to my own words and finally make something to help Asher out with with an important task. A very important task. 

SLEEP.

Sleep has been a battle with Asher since he was about two. He is usually a good sleeper but being uncomfortable often wakes him, sometimes with painful leg cramps and often lately with bad dreams. There is not a ton I can do to prevent either of those occurrences unfortunately, but I can help him with the single biggest sleep issue he has: positioning.

Asher likes to sleep on his tummy. Not sure why specifically, but that is the only way he gets a good night's sleep. I think he feels most secure in that position as his startle reflex kicks in very easily on his back (pesky ol' brain injury has prevented a few infant reflexes from disappearing when they should have). The problem with sleep is that he often manages to roll himself over to his back, and then in his sleepy state doesn't realize he can roll himself back over like he can when he's awake. Well you know how much we all toss and turn in our sleep, so that usually means we are up once, twice, or even three times a night, depending on the night, to reposition him and flip him back over. It was becoming too much for him and for me. I have four and a half and eight year olds - I want sleep! (Ha, I know, wishful thinking). I decided it was time to do something about it.

Maybe because I'd recently bought the special needs swing, but my first instinct was to look for some sort of ready made product that I could purchase off the shelf. That did me no good. The only thing that came remotely close to what I was thinking of was huge, vinyl, and - you guessed it - hundreds of dollars. So to the drawing board I went. 

Unfortunately, my drawing board was blank. Luckily I belong to a couple of really cool online groups, including one specifically for making things for your special needs kids. We parents really are a resourceful group! I put the question out there and was flooded with great responses. And the awesome thing was that while no one suggested exactly what I was looking for, people's responses got my wheels turning. I took all of their suggestions to come up with exactly what had been spinning around in my head but couldn't quite be executed without their wise words. I quickly ran through a mental list in my head, got my mother in law on the case with an old sheet and her sewing machine, and we were in action. So here we go, I know the suspense must be killing you, this is riveting stuff. Asher's sleep situation solved, in ten easy steps.

Step 1: Dig out Rio's unused camping foam. a) We aren't regular campers and b) I think she deserves to upgrade to a thermarest if we ever are. Cut that foam in half, and slice your finger with the exacto knife while doing so. Or don't - your choice. I personally chose the cut yourself method. It's more dramatic.


Step 2. Take each half, roll it up, and secure it with tape. I used packing tape.


Step 3: Cover with garbage bags and neatly and tightly tape up. This makes the rolls easier to slide, but also cleaner (think sweaty kid at night).


Step 4: Measure. Cut. Pin. Sew. Sew. Sew. (No pictures of that step, we were working too hard. Or I should say Gramma was. I am a bit of a slave driver!).

Step 5: Take the finished product that looks something like this. Wrap over mattress and tuck underneath, keeping it secure. 


Step 6: Insert plastic covered foam rolls in pockets that are sewn closed at the top but open at the bottom. Secure bottom with diaper pins from underneath so the squirmy little man can't push the rolls out the bottom, making all of your hard work useless. 


Step 7: Put little man to sleep. Wait for full night of sleep without repositioning. Note - the rolls are far enough apart to give Asher plenty of room to move between them, but not so far apart that they don't do their job. 



Step 8: Celebrate! It worked. In the weeks you've been using it, you've had to reposition exactly TWO times. And it didn't cost you a penny! (other than blood, sweat and tears).

Step 9: Analyze it far more than any normal person should, and think of ways you could make it even better. For instance, the next model will:
  • Have a snap at the bottom of the pocket, not a diaper pin.
  • Have narrower pockets for the foam rolls so they can't move farther apart while he sleeps 
  • Instead of being a separate entity wrapped over top of the bottom sheet, attach completely to the fitted sheet to prevent bunching
Step 10: Include one final and mostly unrelated picture of the little cutie and his BFF baby rhino, and give yourself a big pat on the back for a job well done. 

Friday, June 13, 2014

Last Days

Here they were in September, at the start of school.


Now today, we face a very sudden end to the school year care of the teachers strike. I have a heavy heart about all of it because I feel bad for the kids that this is how their school year ends - and I feel worse for the teachers that it's come to this.

But instead of feeling rattled by the unexpected two week addition to our summer break, I will embrace it. I will cherish having two more weeks of fun in potentially the last summer I am home full time with the kids.

The weather is beautiful, we have friends here for the weekend, and we're off to the school fun fair that managed to squeak in without cancellation, just in the nick of time. Not a bad, if unexpected, start to summer!

Tuesday, June 10, 2014

Drinking and Breathing

The other night at dinner Asher drank his water so fast and for so long that when he finally came up for air he was panting because he'd been holding his breath. We all laughed and Asher replied "I'm just drinking and breathing".

A totally innocent statement that should have passed without me even really noticing. Should have passed without noticing. But it didn't.

At birth Asher and Nolan couldn't breathe or drink. They were ventilated, with total parenteral nutrition running through IV and a feeding tube inserted up their noses and down their throats. Their digestive tracts needed to be primed with about a tablespoon of breast milk, very slowly throughout the day, as they weren't supposed to be "eating" anything other than nutrients from a placenta for three more months.

After they came off the ventilator they were still a loooong way from breathing on their own. They needed CPAP to force air into their lungs to tell them to take a breath and they were on a dose of caffeine to remind their brains to even have a respiratory drive. They eventually got weaned off nutrition via IV and onto full feeds, but still through a feeding tube.

They then spent a long time being tube fed, while on CPAP. Let me repeat: A long, long, long, long, long, long time. Seemingly forever.

Eventually they moved to high flow nasal cannula. And then back to CPAP. And then back to high flow. And then back to CPAP. During that time they started taking small amounts of food by bottle. But that God forsaken breathing got in the way because you know that whole suck...swallow...BREATHE part of drinking from a bottle? That was a difficult skill to master.

From high flow, they finally made it to low flow nasal cannula. The light at the end of the tunnel was near on the breathing front. They were drinking full bottles but still had the feeding tubes in because sometimes finishing an entire bottle was impossible. And ever actually drinking full bottles and breathing without desats? Ha. Not a chance. Drinking and breathing - so not easy, even after months of practice.

And then, the final step. The nasal cannula came off. The caffeine was weaned. They were breathing. BREATHING ON THEIR OWN. At "only" five months old. And you know what that also included? Drinking a full bottle. Breathing on their own while drinking - the final step towards discharge from the hospital.

A NICU stay that endured horrible, dramatic, life threatening complications, but in the end the magic ticket to get them home was something the rest of us get to take for granted - drinking and breathing.

So Asher, you go ahead and guzzle that water. Hold your breath. Come up for air and laugh about it when you're done. Because you've got this, buddy. You're drinking and breathing. Just like the rest of us.



Thursday, June 5, 2014

One Wish

Rio throws her money in the wishing well and makes a wish. She then confidently tells me it's not a wish about her - but she knows it will come true. Knows it.

Later I ask her to let me guess what she wished for because I am intrigued. I only need one guess:

Asher. Walking.

My heart melts. "Really, with your one wish you wished for Asher to walk?", I ask.

"Mama, every time I get a chance to make a wish, that's what I wish for".

Heart melts more.

The best part: she knows it will come true.

The first time she ever held him - 4 months old and still in the NICU. 




Monday, June 2, 2014

It's Heeeeeeere!

The long awaited UpSee has arrived! Do you think Asher likes it?


I've got to say, this thing is everything we'd hoped for. Asher gets to be upright and exploring, and I have zero pain with him in it. Don't mind the awkward photo, but here I am with it on before Asher's in, just to show you what it entails:


I have a belt around my hips, Asher has a harness/vest (that he puts on separate from me and then we attach) and then we strap into sandals together. 

I have to admit that despite their claims to the contrary, I never believed for a single second it wouldn't hurt my back - I only hoped I'd tolerate the pain enough to make it worth it. "My back? You don't know my back" is what I thought to myself each time I read another description of how comfortable it is. But I ordered it anyway because if things hurting my back stopped me from doing things for Asher, Asher wouldn't be doing much of anything. 

Anyway, they weren't lying. They weren't even exaggerating. I am curious to know how many prototypes they went through before they came up with this exact design because I truly cannot believe I feel none of Asher's weight in my back. If he's not bearing weight and just "hanging" in the harness - which he does do and needs to be reminded to have strong legs - then yes I can feel him pulling on me, but only through my legs. And if we get on uneven ground where it's harder for Asher to weight bear because I'm more unsteady, then it does get a bit awkward. Not to mention the fact that most times I am walking like some sort of pigeon toed monster, because I can't figure out how big/small/narrow/wide my steps should be to make stepping the most natural for Asher. But a few more tries and we'll have it dialed, I am certain. Asher consistently taking all of his weight through his legs is something we will work on, with the end goal being him doing all of the weight bearing and initiating the steps. Already, I can definitely feel the difference between when I take the step and when he does, and at that point he is completely weightless. It is a really cool feeling when I am used to physically supporting him all the time. 

Now I'd like to say it's otherwise gone perfectly but that would be a bit of a lie. We've had a few technical difficulties. For instance as well supported as both of us are in it, Asher's tone can still kick in and get him out of pretty much any device known to man. In this case, although his feet were completely supported by the strapping on the UpSee he managed to keep his shoe strapped down while pulling his AFO right out of his shoe. Jordan and I brainstormed several ideas, including putting something sticky or scratchy on the back of his AFO or inside of his shoe - but that makes getting the AFO into the shoe in the first place quite difficult. I mentioned it to a friend who recommended sports tape, and then she promptly ran out and got it for me (I'm surrounded by good people, remember?). The next time he went in the UpSee we wrapped his foot - with AFO and shoe on - essentially taping his shoe to his AFO. I'm pleased to say it worked like a hot damn! We'll have to weigh the pros and cons of using tape (for cost reasons and practicality) vs. coming up with another solution, but for right now it is the perfect fix. 

And the other glitch - well that was when the UpSee harness got caught on my belt (the one on my pants) and Asher was hanging from me, laughing hysterically because I was screaming hysterically at Jordan to "Gettttt hiiiiiimmmm offffffff meeeeeeee!!!". The instructions weren't lying when they said to be sure the harness was positioned on the adult's hips and no higher. Somehow my belt didn't get that memo. Lesson learned. 

Anyway, I think I've done enough talking. Let's get to the part you really want to see - some video of Asher actually in it! The videos haven't been great so far, but this gives you a little sneak peek, including how excited he and Nolan are about it the first time he's in it:


(Nothing like the paparazzi hounding you when you're out for a stroll! You can't even get privacy in your own kitchen, sheesh.)

We are so thankful for this great invention and the very generous people who bought it for us. So much exploring lies ahead...and don't worry, we'll capture lots of it on video for his adoring fans.