My Walking Coffee Date

Nolan and his non-walking. I have been giving this so much thought lately. The doctors, who don't know him, are very worried. We, who know him well, are not.

Ok that's a lie. Of course I'm worried, how can I not be? He is almost 25 months corrected and not walking. I know that is "not normal". But do I think he has some sort of undiscovered brain damage? We're really hoping not.

There are a lot of reasons Nolan could not be walking. For starters,  is it normal to be born at 26 weeks, have endless complications, and be even further delayed because of severe reflux?? Ummm, no.

And even more significant than that, is it normal to have the exact image of yourself, your best friend who happens to share your DNA, be unable to not only walk, but to move themselves at all? That's another big no.

While the doctors have legitimate reasons to be concerned about Nolan, there are so many factors that they are not considering - factors that we are considering greatly.

So what are we doing about it? Well for starters, he is going to physio. We are stretching and standing and practicing walking all the time. We have seen vast improvements in his will to walk - he rarely crawls and gets incredibly upset when we carry him, instead yelling "WALKIE MOMMY!!".

But in addition to the physical stuff, we're trying to address the social stuff too. As much as we try, Nolan does not get the attention Asher gets. In fact he doesn't get the attention Rio gets either. He is the one that has always followed everyone along wherever they need to go. He is the "easy" one and therefore his needs are often not made a priority.

So we're fixing that. We're spending more one on one time with him, trying to nurture his confidence, hoping that emotional and social confidence will help translate to physical confidence. The other day for instance, instead of taking Asher to Feldenkrais, Jordan took him and Nolan and I went out for a date. He was so proud of himself, walking (holding my hand) the entire way from the car to the coffee shop. Yes, he fell several times, and it was incredibly slow going, but he refused to stop. When I tried to hold both of his hands to speed things up he angrily pushed me away, and when I suggested I pick him up and carry him, his eyes burned a hole through me and I knew not to ask again. When we finally got to the coffee shop he sat at the table like a big boy, quietly eating his cookie and taking it all in.

Do you know that other than appointments, that was the first time Nolan and I have been out together, alone, just for fun? And you know what, it WAS fun. For both of us.

So yes, Nolan isn't walking. Maybe it will take several months before he is, and it will likely take a lot more work to get him there. But we will take all the steps we need (zing!), both physically and emotionally, to help him grow and prosper. More one on one attention with both of his parents is the right place to start.

Who wouldn't want to spend more alone time with this handsome (and apparently flexible) gent?

Really, Thyroid?

I don't like to blog when I am feeling down because it translates to my words here. Of course, if the kids read this one day, they will be reading about some (at times) pretty harsh stuff. But I would like to think that most times my writing here is limited to real events, not worst case scenarios that I cook up in my head. Lately, a lot of those worst case scenarios have been swirling around so I've avoided the blog pretty much all together.

Take for instance last week when I had my 6 month follow up on my thyroid. After the ultrasound I was a mess. I was sure they were measuring a lump in my left (good/existing) side so I spent the past week feeling sick about it, envisioning another painful, horrible surgery, and worse - a two week session of iodine radiation therapy where I'd need to be isolated from my family. Those that I told about it assured me that I was over reacting - but I knew. Remember, I have had multiple thyroid ultrasounds in the past where they are measuring a lump; I know what it looks like. So needless to say, my head has been a pretty nasty place to reside.

I saw my endocrinologist this morning for the results. Of course, I was hoping that I was overreacting, but no, that wasn't the case. There it was, on my left thyroid - a 4mm lump.

So what to do now? Well according to my doctor, radiology would claim that a 4mm lump is too small and difficult to biopsy, regardless of the fact that I have a history of thyroid cancer, so given that, I was given a couple of options:

1) Wait the prescribed 6 months for another ultrasound, see if it's grown, and if it has, have it biopsied then
2) Assume the worst (cancer) and go ahead with a complete thyroidectomy without a biopsy

We discussed both of these options at length and neither sat well. While I am by no means comfortable to "just wait and see", I also don't want to rush into a surgery if I don't need it. Not only have I lived through that surgery once, knowing how much it sucked, it would be riskier this time. The whole thyroid would be going, which has more risks associated with it than just the usual surgical stuff.

But then, when we were at a loss, my doctor came up with the best solution. My surgeon (an ENT), who I respect and trust immensely, has recently acquired an ultrasound machine for his office. While radiology at the hospital may not feel a 4mm lump is worthy of a biopsy, the surgeon who has operated on me in the past, and who knows and cares that I have a history of cancer, would likely be willing to attempt it. THIS seems like a good plan.

It's not without complications, however. While the chance is slim, the surgeon may not be willing to even attempt it, leaving me back with the decision of whether to take it out or leave it. But even if he does want to attempt the biopsy, the lump is so small that he may not get a successful sample, also taking us back to the exact same fork in the road.

So, unlike my usual worrying, I am going to try to assume the best. I am going to go forward planning that not only the surgeon will agree to do the biopsy, but that he will get a good sample that will tell us if the lump is benign or malignant.

While obviously the good news is a benign result (people can and often do live with non-cancerous thyroid tumours), my greatest hope is for a result at all. If he gets a good sample at least we have something to deal with, even if it's cancer. If it is cancer, obviously it will come out. If it isn't cancer, it obviously will stay in. If it's inconclusive, as last time, I will be leaning towards surgery just to be safe.

So if you're willing to send me positive thoughts right now, please do. If you are a praying type person, I would not only love your prayers for my mental and physical state to stay strong, but just as importantly that at the end of this we have an answer. Good or bad, I want results. I don't want to have to decide something that is not black or white. After all the crap we've been through, please God, just give us some results to work with.

So there you have it. I would imagine it will be weeks before I even get to see the surgeon, if that is the path we are on. Obviously updates will be shared as soon as we have them. In the mean time, I am going to have a nice weekend with my boys (Rio and Jordan are going skiing) and try to focus on anything but my thyroid.

As always, your support is appreciated.
xo

Absent

I have been a terribly absent blogger lately, I realize. Just not feeling so inspired, for various reasons. I've got something good cooked up for March however, so hold onto your hats for that.

In the mean time, Rio would like you to know she's having a playdate tomorrow!

Yup, that's about how exciting things are around these parts lately!

Adapting

I struggle at times with thoughts of Asher's future, this is no secret. I try my best to live in the present, but worrisome visions are always lurking. Sometimes it's not so hard to push the thoughts to the back of my mind temporarily, but then there's those times when the future slaps me in the face and I can't stop thinking about it.

Take for instance when his neurologist made grand statements about all the things Asher "obviously won't be able to do". That one set me back, let me tell you. And just when I was coming around from the blow of that appointment, I was hit again when we had Asher measured for an adaptive stroller last week.

Those of you outside of my CP/special needs circle are probably wondering what an adaptive stroller is. Well, it's basically a pediatric wheelchair, somewhat successfully designed to look like a stroller (ours will be the same base but different seat from the one shown here). It will allow us to push Asher around outside (although we won't use it much until Nolan is walking and we can retire the double stroller), but - more importantly to us - can also be transferred to a different base at home. Essentially, it allows Asher to have supported seating not only outside, but at home when he is engaged in the two main activities of a two year old - eating and playing. The chair is a great thing for Asher. It will hopefully make his life easier and allow him to use his arms better without the worry of having to control his trunk too. We are also incredibly blessed that we have funding for it - it would run us around $7000 so needless to say he wouldn't be getting it otherwise. BUT (and there's always a but) it's initially a hard thing for us to accept that our child actually needs this, no matter how helpful it is.

Harder to swallow than the chair fitting itself, however, was when the conversation turned to wheelchairs and ramps and a wheelchair adapted van (down the road). No one was trying to be negative or assume Asher won't walk, but these people don't know Asher well, so from their perspective they were being realistic. Jordan and I are not naive or in denial, but he is only two after all, so we try to hold onto a little hope, no matter what the reality may actually be. This conversation made my mind swirl and that's when the future came crashing into the present and I haven't been able to successfully separate the two since.

So I haven't been in a great place. And what do you need most when you're already down? To be kicked of course! And that's what happened when I saw an article about how studies show that physically and mentally disabled kids generally don't have friends. Within a few lines I was sobbing and stopped reading because the thought of it all was too much to take. "That will not be my kid" I thought. What if it is? 

But then, just when I needed it, I was given some sort of sign. That same afternoon when I went to pick up Rio from school, one of the older classes was outside playing. This class happened to include a little girl who has a motorized wheelchair (one of the reasons we love Rio's school so much is that it is inclusive and accessible). I have always seen her around the playground but not noticed her friend situation. Given the article and the horrible stats I had been made aware of, I took a good hard look.

Surely not surprising, when I did look it made me cry. Not for the reason you may think - but because I was relieved. Not only was this little girl playing with three friends, but her wheelchair was a key part of their play. "Did I hear someone call for a taxi?" she happily exclaimed as she sailed past me to pick up a friend and cruise them across the playground. She had no idea of how she had just made my day and helped my heavy thoughts disappear for the moment.

So just when the future looks grim and statistics tell me horrible things, I am given a reminder that things will not be as hard as my crazy, imaginative brain keeps telling me. We will adapt. This future of ours might include more equipment for Asher than we'd planned, but I think it'll also include just as many friends as we'd hoped for.

Game Review

Well wasn't last night exciting. And I mean EXCITING.

Jordan, Rio, and I went to Vancouver to see a Canucks game live. Jordan and I hadn't been since I was pregnant with Rio, and needless to say, Rio had never been.

It was a whirlwind trip. Gramma came to Victoria to stay with the boys and so the three of us took off for just long enough to catch the ferry, make our way downtown, have a quick dinner with Auntie Chels and Uncle Dave, then head off to the game. Here are the excited fans outside the arena:

The game was amazing. Better than I remembered actually. I forgot how fast they are live, and how many of the subtleties you miss watching it on TV as opposed to seeing the entire open ice. The game went to overtime and then a long shoot out with the Canucks victorious. What a game!

I do have to admit however, that the most exciting part of the experience happened about 10 minutes before the game. We were walking down the street and passed a Starbucks on the corner, and lo and behold I saw a sharp dressed man outside. For those of you who care, it was [injured and not playing] Chris Higgins. (My God, good thing it wasn't Bieksa or Edler, I may have fainted). Long story short, through no choice of my own, we got our picture taken. It goes without saying I was a giddy 13 year old girl and immediately downed a pepsi slurpee and a chocolate bar in about 7 seconds because I was so flustered by the entire ordeal.

The original photo.

How the photo looks when I look at it.

Although I had a ridiculously comfy hotel bed, I didn't sleep well last night because I was so excited by the entire event - not just the Higgins sighting, but the game itself. We rushed back home today for Jordan to get to work this afternoon and Rio to catch the last hour of school in order to collect her Valentines loot. That will be a night we all remember for quite some time (I'm guessing me more than the other two!)

Where's Your Nose?

I'm on a bit of a roll taking video of the boys (it's all or nothing with me - it's pretty safe to say weeks are going to go by before you see video or photos of them again). As you know, the boys' language is really coming along. Their expressive (spoken) language has been slow, but their receptive (understanding) has been blowing our minds for months. Both boys can follow multi step commands, for example: "Nolan, please stop doing that. Get your sippy cup and drink your milk". Of course Nolan physically has no problem showing us his understanding and following through on the commands, ensuring us he really does "get it". Asher, obviously, struggles physically with carrying out tasks on command, but it is amazing how good he is at still showing us his understanding.

Here you'll see Nolan showing off his various body parts with ease. Then you'll see Asher try to follow the same commands. By no means is it graceful, but you can't mistake what he is trying to show you. Prepare to watch it several hundred times, each time muttering to yourself that you don't understand how they KEEP GETTING CUTER.

Nolan:



Asher:



Anyone notice they both got eye wrong on first try, thinking it was their ear? I swear they are the same person! CREEPY TWINS!

Flashcards

The boys' language is really coming along. Asher has over 30 words and Nolan may have closer to 40 - every day we are hearing something new. They are "supposed to" have 50 words at 24 months (which they are [corrected]), but like our infant development consultant says - they have until 25 months to get there! Given the rate with which their language is improving, I have no doubt they will be at, or close to, 50 words by March.

That said, not all of their "words" are actually words. For instance "meow" means cat and "brrrrrm" means car. But since they make those sounds every time they try to use the words, we're counting them as words. Not sure our speech therapist would necessarily agree but they are communicating verbally and definitely showing their intent, so that's good enough for me!

One of their favourite things to do is look at flashcards. Mostly they chew on them (Asher) or bend them in half (Nolan) but they can play with these things for a long time. Whatever works to keep them occupied I say! Here is a video of them using them as they are meant to be used:

A Desperate Housewife's Guide to the Canucks

I love my Canucks, I don't think that's any secret. I'm not quite as obsessed as I was last year and actually I did have a bit of a slow start to the season. However I have pretty much ramped back up to super fan status.

Needless to say, I give them a lot of thought. So much so that I often have to stop myself from making solely Canucks related blog posts. I have a ton of stuff to say - everything from legitimate hockey analysis to really important things like who's the best dressed player on the team. (Hi Alex Edler- rarrrrrr!) In fact I could probably start a whole other blog about my thoughts on the Canucks - "A Desperate Houswife's Guide to the Canucks" or some such. Funny idea, maybe I should give it some thought.

But for now I'll stick with this blog and the usual content - three cute kids, who just happen to be decked in their Canucks gear. This year we've upped the ante and added toques (that's pronounced "tukes" for you non-Canadians. We prefer a more exotic term that boring old 'winter hat'). Check out my little hockey fans:

 Don't mind the unphotogenic one....but I think the photo below makes up for it....

 What up?

And since this photo has apparently turned into an annual event, here's the past 2 years' Canucks posedown:

2010/2011

2009/2010

Nolan just pointed to the pictures on this screen and said "HOCKEY". Apparently we're successfully raising a new generation of super fans!

Mom

"Mom".

Not an offensive word is it? In fact it's quite a lovely word - signifies lots of nice things.

But I can't stand that word right now. Why? you ask.

Because recently I've become one. I'm somebody's mom.

Have I confused you? You're right, I've been a mom for almost 6 years. But no one has ever called me that. Mama and mommy, sure. But "mom"? Never.

Until now.

Suddenly, as often as not, Rio has started calling me mom. And I HATE it.

Mom is what big kids call their moms. Mommy or mama are what little kids call their moms. Why 'mom'? I ask her sadly, but know I've embarrassed her when she doesn't respond. 'That's what my friends call their moms' is the answer that I can clearly see in her eyes.

I should be thankful for "mom" because soon she'll be rolling her eyes and calling me "muuuuuther", or won't be calling me anything at all and I'll be lucky if I get a grunt in my direction.

Big kid. I have a big kid. And she has a mom.

Cue the tears.

Sleep Training

Since September, a couple of members of this house have been going through sleep training.

That would be me and Jordan. As in, we're being trained on how to handle children that don't sleep.

Since September, this whole "no sleeping" thing with the boys has thrown us for a serious loop. Jordan and I breed sleepers. Period. Take for instance Rio, up only once in the night by a few weeks old, and fully sleeping through at 10 weeks. Sure, we had some hiccups when she was a toddler, but it was always just a phase. Rio was and is a good sleeper. The other night Nolan had inadvertently set her alarm and when I went in at 1:31 in the morning, after hearing it buzz for 5 minutes and not knowing where it was coming from, she was fast asleep. Snoring in fact. The only evidence that it had disturbed her at all was that in the morning she told me she had heard birds chirping in her sleep!

Peaceful Rio 

The Old Randoms

I haven't done a random-factoid-post in a while, so here goes.

Rio:

Busy swimming and skating and skiing and soon to be dancing. Yes, she convinced me to register her for dance AGAIN. After so many unsuccessful attempts (I believe 4?) I think she's going to do it this time. She better, because for once we don't have hand me down shoes and I need to actually buy her ballet shoes. Skating lessons have gone well - she "passed"to the next level, although at her age we're trying to play down that term so she isn't upset if/when she doesn't next time. She is also getting very close to reading - I think one day the switch is going to just flip and she'll be there.

Oh ya, and she's become obsessed with having coloured hair. At least 25% of the girls in Rio's school have some sort of coloured streak in their hair - usually pink. Several of the boys in Rio's class also have multi coloured mohawks. It is apparently "the new thing". Rio has been begging for it since well before Christmas and I finally gave in. No, I am not permanently dying my daughter's hair, but I did find some coloured hair spray and this morning I surprised her with it. Considering how easily it washed off my hands I will assume (hope?) it will wash right out of her hair. Consider her tickled pink purple! I think she is adorable. Her dad thinks I am turning her into a beauty queen.

Asher:

Still doing Feldenkrais and seeing great results. Because we are with him every minute we don't see all the subtle changes, but friends and family that don't see him as often are really noticing. Going to try some new stuff with our regular PT and OT but will delve into that further once we try it out. He is using about 30 words, but although he has all those words he speaks a lot less than Nolan. My favourite is that he yells "WALK" at Nolan every time Nolan tries. Still loving his BOOKS. His favourite word and favourite thing and you could seriously leave him in front of his book shelf ALL DAY. The only reason he'd complain is if he had pulled all the books off and needed them restacked. Seriously if the kid sees any book - like could be our novel or cookbook - it is game over until he has it in his hands.

Asher's OT is going on mat leave in a month. While we are thrilled for her, we are sad because she is absolutely wonderful and we will miss her dearly. They have, however, hired her replacement, and while they won't overlap officially, they will swing it somehow so they can both come for a visit and meet Asher together. It's wonderful that our new OT is taking over our entire current OT's case load, so in theory, when the year is up she will just give all the cases back instead of us getting reassigned someone else new.

Nolan:

Now that we are seriously encouraging (enforcing?) walking, he is really trying. He needs to push something, hold a wall or our hands, but he is gaining confidence. He is starting PT and possibly even Feldenkrais until he masters it. While the neurologist's comments about his non-walking got us worried (ok MAD) last week, I think they were the kick we needed to start encouraging him more. Seems to be doing the trick.

He is using about 35 words and doesn't stop talking. There is a running commentary about everything and it is hilarious to hear. My favourite is "nigh nigh digo" -- translation: "Good night Gorilla" (his new favourite book).

Both Boys:

Sometimes the boys are so similar it's easier to talk about them as if they were one entity...

We saw their infant development consultant today and went through a checklist for 24 months (the boys are nearly there [corrected]). In fantastic news, the boys are socially/cognitively exactly where they should be for 24 months. Although Asher is limited in his motor skills to show us some of the things Nolan can, he has his own ways of making his intentions clear. Such great news!

And speaking of them being one entity - sometimes I wonder if they have a clear understanding of the differences between themselves. Sounds funny, I know, but I think being identical really complicates things. They both know with certainty who mommy, daddy and Rio are, yet if you point to the other, or point to a picture of both of them, they seem incredibly confused. Although they both respond to their own names, they don't say their own, or each other's names - ever. It's kind of weird to say, but it's like right now they just see each other as an extension of themselves. Creepy twins!

Parents:

Boring. Same old. Jordan is off snowboarding for a couple of days and I am holding the fort. But you don't really care about us do you, so I won't make you read any more of that.

That's us. What's new with you?

Comfort Cloths

When downsizing the boys' baby stuff I am generally thrilled to toss things into the donation bag. But today in my cleanout I saw something that stopped me in my tracks. In the back of the drawer there they were hiding in a pile - the comfort cloths. I'm not entirely sure that's what they're actually called, but in our NICU they call them something along those lines. Parents of preemies will know what I'm talking about - the soft flannelette cloths that laid under or on top of our teeny tiny babies when they were in their isolettes.

Exhibit A: Nolan is so tiny his entire body fits on top of one.

Exhibit B: Asher has two under his head and one on top as a blanket.

These little cloths were their first pillows, blankets, and clothing when for the first 3 months of their lives they lived in nothing but a diaper in a plastic box (or cage as Rio called it). They were meant to provide the tiniest bit of comfort to these babies who were covered in so many wires and tubes and had very little human contact. Even later, when the boys were in a full sized crib, one of these cloths was always under their little heads. 

Exhibit C: Just before homecoming - those are the same size cloths under their heads that used to fit entirely under or over their tiny bodies 

Since coming home from the hospital they were repurposed as spit cloths (affectionately referred to as 'barfies' around here) and boy did those come in handy during the severe reflux days. But now they're not needed in any form and until faced with disposing of them, I didn't realize how attached I was. When I asked Jordan what we should do with them. his response of  "they'd make perfect cleaning rags" was apparently not the right answer. While by no means was he trying to be insensitive, I was reduced to tears nonetheless. Dusting with these precious cloths? Not a chance.

But what to do with them? Nothing practical for certain. I can't donate them back to the NICU because every family gets their own new ones, and I can't make something sentimental like a pillow, because I have enough baby blankets to do that with. So for now, they'll get shoved in the rubbermaid in the garage that stores all the boys' other sentimental but useless keepsakes. At least maybe one day they can use them as barfies for their own kids, and that's more than I can say for their souvenir CPAP hats or cardiac leads!

I didn't realize there were many things from the NICU that would actually bring me happy memories. Thank you little pieces of flannel for doing just that.