Summer Bucket List

Thursday was Rio's last day of school and therefore the official start of our summer. That said, it doesn't really feel like summer because it's pouring rain, plus 3 out of the 5 members of our family (now including Jordan) have had the gastro bug (fingers crossed for me and Ashy). We've kind of been holed up, mostly stuck in the house.

No excuse not to plan for fun times ahead though! I must admit I stole this 'bucket list' idea from a friend, but what a great idea it is. Here's ours:

1. Get faces painted.
2. Camp in the back yard.
3. Take Rio to a movie at the theatre.
4. Teach Nolan to actually pedal his big wheel instead of just "Fred Flintstone" it.
5. Get ice cream from the ice cream truck.
6. Go on a boat (BC Ferries doesn't count).
7. Go to water parks.
8. Have a family picture in front of Mt. Rushmore.
9. Dig for dinosaur bones.
10. Swim in a lake.
11. Ride a horse.
12. Cook a meal based entirely on food grown in our garden.
13. Visit outdoor summer markets.
14. Go to a drive in movie.
15. Ride our bikes for a picnic lunch.

My goal is to report back at the end of summer on just how much we accomplish, along with photos. Looks like it could be a pretty fun summer (that is if the sun ever starts shining!)

Last Day

Today was Rio's last day of kindergarten. Wasn't it just her first day?! To commemorate the occasion we decided it would be cute if she wore the same outfit - a little more faded and worn but pretty nonetheless.

First day of kindie

Last day of kindie

Little events have been going on all week. A completion ceremony on Monday included a presentation of a diploma, art work, and a whole bunch of cute songs and performances for the parents.

Tuesday was a field trip to the beach, which Rio not only had to miss because of the stomach flu, but also had to watch as all of her friends and teacher marched down our front street on the way there. Heartbreaking.

Wednesday was an uneventful last full day, and today was a school picnic on the field. Parents were welcome, so the boys and I joined in. Rio said goodbye to all of her friends, I exchanged contact details with moms about playdates, and Rio proudly presented her teacher with a gift and beautiful homemade card.

Summer has officially begun (contrary to what the west coast weather tells us). In a blink of an eye grade one will be here. I'll just try to enjoy this little milestone before I begin lamenting the next one. Holy, having your "baby" finish kindergarten is a little bit traumatic!

Helllllooooo Gastro!

Another one bites the dust. Nolan spent the entire night up throwing up (filling his bed, and Asher's, of course). He was reeeeeally sick and seemed to have been hit a bit harder than Rio. Thankfully he seems ok this morning. Woke up happy, if a little out of it. We'll see if the fever comes now as it did with Rio, but here's hoping he's through the worst of it. Now it is just a matter of time till it hits Ashy....and us?

Because of our fear of Asher aspirating (yes, Jordan's worried too - for once I'm not over reacting) Asher will sleep in our bed until this has come and gone. Better to be safe than sorry and be available immediately to help him if it happens.

Unfortunately all of this overshadows Rio's last day of school a bit, ruining some plans for a picnic, and rendering some cookies Rio and Nolan baked and decorated too potentially germy to risk handing out to friends. (Does that mean I should just eat all of them since I'm going to get this bug anyway? I hate to waste).

Ugh. Sadly we're only 40% of the way through the family. Did I mention how much this sucks?

One More First

First it was the beds. Then it was the hair. Then Rio had her kindergarten completion ceremony (more to come on that).

So why not throw in one more first, and make it a biggie?

Rio had her first BARF.

Yes, sorry to be disgusting, but at 6 years old Rio has her first case of the stomach flu. And let me tell you, she did it in fine fashion. Poor little thing filled her bed, then she filled ours, and now she is on the couch with a big metal bowl, pretty traumatized by the whole "dry heaving" thing.

She is so darn cute and brave. Obviously throwing up is about the worst thing ever, yet she manages to be concerned about the little things instead of how crappy she feels. For instance at 5:30 this morning when her bed was unavailable (because it was full of barf) and our bed was unavailable (because it was full of barf) she looked up at me with her big blinking eyes and said "But it's not seven zero zero and I have nowhere to sleep!". Bless her little heart.

So now, I rush around disinfecting and pacing in front of our washer, willing it to hurry up, because I have so much vomit soaked laundry to wash, and a plumber needs to come today and likely shut off our water for a while (to deal with another problem. God love old houses).

PLEASE whoever out there who is listening, DO NOT let the boys get this. I have been up since 3:30 am having terrifying thoughts of Asher throwing up in his bed and aspirating. I know I am getting ahead of myself, but that's my schtick - worrying about things that may not happen.

Now as for me, I'm terribly nauseous this morning, but it could be because:

a) I'm melodramatic
b) I'm a hypochondriac
c) I've dealt with so much barf in the past 5 hours that I have every right to be nauseous
d) All of the above

Here's hoping it's d) and I'm not actually getting sick. Time will tell...

Another Big Boy First

This is the week of "big boy". First it was the beds (which by the way is going ok. Asher sleeps in his consistently and Nolan is in his most of the time. Tomorrow the last play pen gets put away).

Today, it was haircuts. I know, we were resistant for a long time. Maybe too long. But I knew that as soon as they had hair cut, all remains of my babies would be gone, and little boys would take their place. I was right. My wispy-haired babes are officially big, mullet-free boys.

The finished products are very cute and kept a lot of the length. For being identical twins they have VERY different hair, so Nolan ended up with a bit of a 70s bowl, and Ashy is more of a wavy haired surfer. Love it! Thanks Auntie Michelle for making this so much less painful being at home.

Always a Laugh

Even when things are stressful or even unhappy, we always seem to find something (usually inappropriate) to laugh at.

Yesterday, for example, we spent the entire morning at a fitting for Asher's new stroller/pediatric wheelchair. It was way longer than planned and incredibly exhausting for all of us, but considering I brought along zero supplies, the boys were absolute angels.

Included in that lack of supplies was diapers. And of course, why wouldn't Nolan choose to fill his diaper in grand style when there weren't replacements. "Don't worry. We can find you a diaper, no problem", said the seating clinic's OT.

A few minutes later she returned chuckling. Oh she found us a diaper all right, it just happened to be of the adult variety.

Nolan rocked those Depends briefs like a champ. And it wasn't even just the wearing of them, it was the constant patting of himself saying "mmmm comfy".

Happy Friday. You're welcome for giving you your dose of unicorns and rainbows as you go into the weekend!

Experimentation

For many reasons (one being how could their sleep get any worse), Jordan and I decided that it was time to move the boys to big boy beds. We had progressed through various incantations of sleeping arrangements, and now was no different. Once we got the idea in our heads, there was no stopping me and my standard issue Ikea allen key. A couple screws loosened, et voila, the rails were off and we had beds (God I love these cribs/beds. I will never regret how high and low I searched to come up with a match for Rio's discontinued model).

When the boys saw their beds they were beyond excited. Nolan kept looking at me with wide eyes saying "Big boy bed!" and Asher, when placed on it, just writhed around, squealing in delight.

Aww, cute right?

Well, then came bed time. Ruh roh. Problem.

Apparently the big boys beds weren't as exciting at bedtime. Or maybe they were too exciting? Regardless, it wasn't working. We went from beds pushed together, to beds separated, to both boys in one bed, to beds pushed together again. After much exasperated cuddling, singing and crying (them and me) we decided to throw in the towel. Nolan in the play pen in his room, Asher in the play pen in ours. Everyone got at least a little bit of sleep.

But this morning we cursed ourselves. How did two, educated people who have been successfully parenting together for  6 years make such a momentous mistake? We thought they were ready. Clearly, we were wrong.

As wrong as we apparently were, we're not ready to start back at square one. So instead, their room now contains two beds and two play pens. We figure the playpens actually aren't a bad idea - if they need to sleep in them off and on over the next few weeks, that probably means they'll be willing to sleep in them on our three week vacation, saving me from my desperate search for inflatable toddler beds.

Not quite as cute

So in attempt #2 - naptime - we had a bit more success. They slept in the same room, but not exactly how we planned. Asher was in his bed, and Nolan was in the play pen. What happens tonight? Not sure, but bedtime is quickly approaching. A whole lot of trial and error (and a whole lot more sleeplessness no doubt) is coming our way.

Boys, why are you so hard? This was so EASY with Rio!

8 Years

Yes I know my last post title also referenced a length of time. Sorry about that, lame.

Anyway....

Eight years ago today, on the most beautiful backdrop of the Pacific Ocean and the Coast Mountain Range, I married the best man I have ever known.

When we said "for better or for worse", apparently we meant it. We have already been faced with many couples' entire lifetime of "for worse" yet we've made it through stronger. That's because in 8 years we've also been lucky to experience more of the "for better" than many couples have in their whole marriage.

For better for worse. In sickness and in health. For richer or for poorer. Check, check, check - we've covered it all.

Happy Anniversary to a pretty good couple, if I do say so myself.

14 Weeks

Fourteen weeks is how long Jordan and I spent on our honeymoon, backpacking through South America. At the time it was the most significant, amazing period of my life.

Fourteen weeks is also how early the boys were born. Turns out those 14 weeks would be a lot more significant and life altering.

A random* amount of time, arbitrary in every other way. But a length of time, good and bad, that has so much meaning to this family.

*Speaking of random - how's about this post? Totally random I know. But I got thinking about our honeymoon last night and made the connection.

Respitality

Oh am I excited for tonight! So excited. Jordan and I are off for a night on the town - a whole night away from the kids!

Our respite program, aside from giving us a respite worker for a year, has an added benefit: each set of parents in the program gets a night in a hotel! The accommodations are donated by several hotels in town, so although you can't choose your location, you give them the date(s) you are available and they do the booking for you.

We chose this weekend because of its proximity to our anniversary (next Tuesday). We ended up at a very nice hotel, right down town, that coincidentally houses the restaurant we went to on our first date 13 years ago. However, the timing, as it turns out, could not have been better for many other reasons. Nolan's diagnosis, Nolan's behaviour as of late, and both boys' lack of sleeping have all sucked the life out of us in recent weeks.

This is our first time leaving all three kids, and only the second time ever leaving the boys (first being the Canucks game with Rio). We are so lucky that the kids grandparents are coming into town to watch them for the night, so I know all of them will have a blast. I am hoping I can completely enjoy myself instead of worrying that the kids are eating/sleeping/behaving.

Many, many years ago, this was us. Maybe tonight we can channel a bit of those youthful, free, uncomplicated spirits.

So What Happened Then?

So now that you've digested the news of Nolan's CP, you're probably wondering how or why this happened. Rightfully so. Let me give you our best guess.

Although Nolan never had brain hemorrhages like Asher did, he had an extremely rocky road in the NICU. I think that is sometimes forgotten in the wake of Asher's brain injury - thinking about what Nolan also endured. Nolan was on a ventilator for 6 weeks (to put it into perspective Asher was on it for less than 2 weeks) and then CPAP for months after that. He had episodes of apnea/desats that required resuscitation several times - once I watched him turn literally navy blue on my lap. He had a lung hemorrhage that was incredibly serious and scary. These are all events that could have caused brain damage, and unfortunately, one (or more) of them did.

What about his perfect head ultrasounds though? Shouldn't they have seen damage? Not necessarily. Apparently they are falsely promising. A head ultrasound is only really good at showing blood in the ventricles, which Nolan didn't have. Other more subtle injuries go unseen. Our neuro told us that in rare cases it is possible that something as major as a stroke in a full term baby can go undetected on a head ultrasound. Part of me wishes I knew this detail earlier, but part of me is glad for my false sense of security that Nolan's brain was ok. I can't even imagine if we would have been dealing with the unknowns for both boys right from birth.

So because he hasn't had an MRI, we won't know anything for sure about how his brain looks until he does, which won't happen until he's at least 8 years old. After Asher's dramatic attempt, it is just not worth the risk of sedating him, and 8 is the minimum age (in Victoria) to MRI without a sedative. To be honest I don't even know if we will ever care to do one, but we'll cross that bridge when we come to it.

In any case, the neuro believes that Nolan's damge is very subtle.

When discussing the diagnosis with our physio, we talked about type. Asher has athetoid CP (a very rare kind), whereas we believe Nolan has the more typical type of spastic CP - spastic diplegia to be precise. In lay man's terms it means he has tightness that affects both of his legs. I wasn't at all surprised to hear our physio's take on it; given how large my "CP circle" is now, that is what I had diagnosed him with myself.

So now you know as much as we do. Some people never know what caused their full term, healthy child's CP. Our boys were born way, way too early and had an incredibly rough start. No more explanation than that is really necessary.

Another Label

Last time I wrote a post like this it was easier. Ok well not exactly easier - but less shocking.

But easier in that very few of you were surprised by what you were reading, sad as you were to have the words officially said.

This time however, I don't feel like I can just cut to the chase, because there are going to be very few of you who are not surprised to read this news.

It is harder to come up with the words this time. Last time, I wrote the post immediately when we got home. This time I have been stewing on it for days, almost a week in fact, wondering just how to say it.

Now I am just dragging this out aren't I, and probably making you a bit nervous? Don't worry - we are all well. Everyone is safe and healthy.

But here goes: Nolan has CP.

I'll give you a moment to digest that and re-read it.

Nolan has Cerebral Palsy.

There, I said it.

Huh? What? How? or some sort of stunned silence is what I'm guessing your response is.*

Well, he's almost 2.5 years old and he's not walking. There lies the problem.

Those of you who have seen him in person want to argue with me don't you? You've seen him walk! Of course you have. A few steps here and there on perfectly level ground. But you haven't seen all the times when he can't walk. When he gets off balance and shaky and falls over, constantly skinning his knees or bumping his head. It's heartbreaking how badly he wants to walk and how determined he is, yet he can't quite do it. For a long time the argument could be made that he was "almost there". But a typical baby walks ten steps, then fifty steps, then a hundred steps, then they run off and never look back. That is not Nolan. For ages he has been able to walk some distances with minimal assistance. But he falls, and he falls again and when he is successfully upright it is very awkward and unsteady.

Do you know what a bad guy I have felt like when anyone has commented to me on how well Nolan is walking, and I have been less than enthusiastic? I've felt horrible being so negative, but it's been the truth. I've seen how you've looked at me - like I am crazy and not giving him enough credit. But in my heart, I've known for quite some time that something's been wrong, even though I haven't wanted to believe it, and surely not let on to anyone else that I was concerned.

So at the neurologist's office last week, she started talking about Nolan's CP like it was just this accepted thing in our lives. "Well in a case like Nolan's CP..." or "When a kid has CP like Nolan..." and to be honest I never interrupted her and said "Pardon?". I never got teary. I just nodded and listened to her.

I never asked her WHY she was saying Nolan had CP. Somewhere, buried deep where I didn't want to admit it, I knew.

Nolan has always done things to the beat of his own drummer so to speak. A bit slow to sit, a bit late to crawl, just making his way through everything he needed to, but a bit behind. All along everyone thought it was "just him" - just the way Nolan rolled. Even when he wasn't walking at 18 months - the outside edge of the normal range - all doctors and therapists (and us) saw his motivation, so no real alarm bells rang. But now, it's not ok.

At some point, likely during the first few weeks of his life, Nolan's brain was injured unbeknownst to us  (I will get into why/how in a further post). The good news is that we all believe that the damage is likely very subtle. Look at him - that's pretty obvious. Given that his fine motor and coordination are all as expected (confirmed by the neuro), it is only his legs/hips that are affected, and only very mildly. But still. They are affected.

So this diagnosis is an explanation. Nolan is still Nolan. The scope of what "could" go wrong from here is so very small, so that is a lot easier to take than Asher's diagnosis in that respect. While Nolan has proven that he can accomplish every single physical milestone just short of walking [unassisted for the time being], Asher could not do much of anything physically when he was diagnosed so the big black hole of his future was much scarier than Nolan's is. This diagnosis is a label. As with Asher, nothing changes for Nolan. He continues with therapy and he doesn't get worse - he only improves. Do we think he is going to walk steadily, without assistance, one day hopefully soon? Absolutely.

All of that said, in some ways this diagnosis is harder to take than Asher's. Asher's we were certain was coming, it was just a matter of when, and who was going to say it. But in Nolan's case we were hoping - praying that if he magically started to walk soon - that this would all just go away. Clearly, it didn't.

Cerebral Palsy. Something I knew so very little about until 2.5 years ago and now two of my three kids live with it. Wow. Didn't really see that coming. Also didn't realize just how amazing those two kids with CP would be.

*Family and close friends - I'm sorry you're reading this here. We probably should have told you personally but we (particularly me) just couldn't deal with saying the words out loud. So we're quietly digesting the news and going along with life as though nothing's changed, because really it hasn't. 

Sleepy Sunday

We got home from our weekend away and everyone is exhausted.

So much playing and running and just being kids who don't get to see their good friends often enough.

So much eating and drinking and just being adults who don't get to see their good friends often enough.

Today when we got home from the ferry, the boys went straight down for nap. Rio asked to watch a movie, saying (and I quote) "If you let me watch it I won't make a peep and you and daddy can have a nap". DONE! Quite the little sales girl who knows how to make a good pitch. Did that make me a bad parent sticking my kid in front of a brainless movie so I could catch a few much needed zzzz's? Maybe, but at that point I didn't care.

Must go, the zombie apocalypse awaits. No, I'm not trying to make a stupid joke about the state of my house or my unruly children - Jordan and I are smack dab in the middle of The Walking Dead.

Night night.

Prima Ballerina

Earlier this week was Rio's final dance class. Yes, she made it through an entire session! I think this was our fourth or fifth attempt of her asking to take class and then getting too shy on the first day, requiring me to withdraw her. But this time she stuck it out. She more than stuck it out - she flourished. She absolutely LOVED it and it was amazing to see her with so much confidence. 

The last class meant that parents got to come in and watch. These are just a few of the hundreds of photos we took. I will spare you from the [pretty hilarious] videos.

Hope you have a great weekend. We're off for a quick Vancouver getaway to see friends. Always good for the soul.

How Much is Enough?

I'm in a bit of a funk about therapy for Asher these days and I'm not sure why. It's not the therapy itself, it's my reaction to it.

What that reaction is, I'm not entirely sure. I know it's not the excitement and hope and promise I used to feel. I think it's safe to say the feelings I'm having are driven by guilt. The guilt from wondering if what we are doing is enough.

How do you know what the right amount of therapy is? Well you don't. You have to use your best judgement and figure out what works for your child and your family.

Everyone says "You're his mom, you know what's best for him". But do I? What I think is best and what is realistic are often very different. We have varied therapies a couple of times a week. Sometimes I think it's the perfect amount, sometimes it's way too much, and other times it's not nearly enough. Is the amount he's doing actually what's best for him, or is it constrained by time and finances and energy?

I am in a very active online support group for parents of kids with CP. It seems like there are moms posting every day about their kids therapy and just how much of it they do. Instead of inspiring me, it makes me feel bad to be honest.  But at the same time, there are parents (and adults with CP themselves) who think maybe the therapy should be laid off a bit - allow the kid to just be themselves and show them that you accept them exactly for who they are. Parts of me subscribe to that train of thought too.

It's not just the therapy itself though, it's how we manage it at home. Do we do his (and Nolan's) exercises enough? Definitely not. Does he always sit or stand perfectly in his equipment? Sometimes, but not always. So where do we draw the line there? Is it more important to always have him in perfect form so he learns the best way to do things, or should we focus more on just letting him be - having fun and enjoying himself no matter what position he's in? (We do definitely lean more towards the "imperfect but fun" approach, but there's guilt associated with that too).

The bottom line is that wondering and analyzing and thinking about Asher and his well being are something I never get a break from. Yes, respite is fantastic and we appreciate the break it allows us to have from taking care of the kids. But the truth of the matter is that the physical responsibility of caring for Asher is nothing compared to the weight of my thoughts.

If only there were a way to give me some respite from my own head.

Mmmm Peanut Butter

Like he isn't delicious enough as it is without smearing peanut butter all over his face.

Saturday Afternoon Drive

Nolan proudly entertains himself in a parking lot by taking a spin at the wheel.

Asher is less impressed, although it could be because of his hairdo. Mommies can be so mean sometimes.

Yard Love

After showing you how much work went into our yard, time to show you some cuties giving it some love. 

Happy Friday!