Bad Luck Charm

The other day I finally got rid of my "bad luck shirt".

This shirt is what I wore the day I had my biopsy for my thyroid. I was so traumatized by that event that I knew I'd never wear that shirt again without being upset by looking at it. (Darn it - it's a nice shirt!)

Because I had already "ruined" it, I decided to wear it the day I got the results from my biopsy. I assumed it would be bad news (it sort of was) and didn't want to "ruin" another perfectly good outfit. I am psycho* I know, but I always remember what I'm wearing at good and bad times in my life!

Then when we went for Asher and Nolan's surgical consult, I assumed one of them would be having surgery (turns out it was Asher). Bracing myself for yet more bad news, I wore the shirt.  After explaining to Rio why I HAD to wear that shirt that day (she wanted me to wear something else) it became known as my bad luck shirt.

Thinking about Tuesday's surgery, I of course gravitated towards that shirt. Then I stopped in my tracks and said HOLD UP. Why do I keep wearing this same shirt, ASSUMING I will be getting bad news? Why do I keep wearing this shirt and feeling like I am bringing more and more bad luck on myself?

So instead of deciding to wear it, I swiftly put it in the donation pile that was heading out the door. Like that it was gone.

And maybe like that, so is the bad luck that has plagued us?! Not saying a material object like a stupid purple shirt has put a vex on our family, but maybe getting rid of the shirt helps getting rid of my negative attitude and worries? In that case, GOOD RIDDANCE!!

All I know is that come Tuesday, I will not be wearing a good luck or bad luck shirt. I will be wearing a shirt that is not tight around my neck. That's all that matters.

*Superstitious much?

Ahh Weekend!

I finally feel like I may be back to normal after last weekend's hospital events. That gives me three days of feeling good before my neck gets slashed open and a part of me removed and queried for cancer. Fun! Asher is mostly back to himself too, although he's still stiffer than normal and seems to be on a bit of sensory overload (crying over every sound and startle and he has NEVER been like that). Seems like it's taking his brain a little while to reset after being sick.

Day one of our weekend has been great. After canceling almost all of our plans last week in order to recuperate, today we made the most of things. A trip downtown and to Chinatown; a solo shopping excursion for me; some much needed attention paid to our van and its inner workings; play time on the trampoline with three kidlets; a delicious dinner; and now a quiet night where two are down, one is on her way, Jordan is out, and I am catching up on reading.

More fun lies ahead in the next two days, hopefully including a lot more sunshine. Finally, a brief glimpse of summer.

Happy long weekend y'all! (well those of you in BC anyway!)

More Gear - Bath Seat

A while back we mentioned to our PT and OT that we had started bathing the boys together and they were really enjoying it.  Essentially Asher would lay the length of the tub and Nolan would crawl/sit in the remaining space. Both boys loved it, despite the fact that they were constantly kicking each other in the crotch. PT and OT thought we should give a bath seat a try, to allow the boys to "sit" together. I had no idea that there was such a thing as a bath seat, but why wouldn't there be?! There's a piece of equipment to help him do everything else, why not bathe?

First attempt was bad - really bad. Asher was terrified and I had Nolan in there with him causing trouble. I made a bunch of adjustments but the second attempt was just as bad for Asher - at least I was smart enough to leave Nolan out of the equation. Then, realizing Asher was getting sick, we put it to rest for a week or so, knowing that him being under the weather would not be helpful to him adapting to something new.

A couple of days ago we tried him in it again, quietly and calmly, and he did ok. Tonight we tried again and he did even better. He didn't seem scared at all, although when Rio saw this picture she said "why are you showing a picture of Asher so nervous?", so I guess he was a bit! He actually sits a lot more upright when I help him, but since I had to go hands free to take the photo, he's slumped a bit.

I'm not so sure about this, mother!

We'll try a few more times on his own to get him used to it before we include Nolan. That said, it is a lot more work than just letting him lie down flat, so not sure how bathing the two of them together will work. Because he is "sitting", yet can't sit on his own, I can't really take a hand off him (contrary to this photo where I was dealing with not only a camera, but some privacy setting of a face cloth!) I think if we want to include Nolan it will have to be a two-parent job. Regardless, getting Asher to sit up as often as possible is good for him and the warmth of the bath is good to loosen his muscles while doing so. 

Sorry Asher, not even bath time is free from therapy. Good thing you love the water!

Claire's Prayer

I am reprinting the following with permission of Claire. As you can tell by the name of her blog, Claire has a severely disabled kid. When I first started reading it, I found this prayer that she wrote, and I think any parent of a special needs child, no matter the severity, can relate. Call it a prayer, a mantra, a motto - you don't need to be religious to know much of it applies, to an extent that you can't really understand unless you're living it. I'm not trying to patronize those of you who are not living it - but remember, I used to be "one of you" and I can say with certainty that I didn't get it until it became my life.

Thanks Claire, your daughter is a lucky girl to have you as her mom.

----

In this moment I accept that I have been given care of a very fragile person.

I accept that I may likely never know why this task has been passed to me.

In this moment, I accept that I need not know more than the fact that what I do has value.

With that, I will care for this person to the best of my abilities.

I will forgive myself for the days I could do better, but don't.

I will forgive myself for the days I would do better, but cannnot.

I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.

I seek to be supported in whatever ways financial and emotional that will maintain this balance.

I seek to learn how to draw from a well of infinite patience and energy.

I open myself up to the possibility of joy, of fulfillment, and of grace.

I accept that, in this moment, it is all I can do.

Nesting

This week I'm nesting.

Not because I'm having fun, doing anything like being pregnant! Oh no. In fact I never nested when I was pregnant. With Rio, I was naive enough to think that in the 10 days I was off work pre-due date, plus the two weeks she was sure to be late given that she was my first baby, I would do all my nesting then. Ha! She came on my last day of work. Talk about ill prepared. Little old organized Tracey didn't even have her hospital bag packed.

And then there's the boys. No nesting there either. When I went off work at 24 weeks I planned to do it then...but...well, you know the rest of that story.

So now I'm nesting. But I'm not excited about it. I am doing everything to prepare my house for mama being out of commission after surgery.

I'm cleaning.

I'm baking.

I'm making list after list after list.

I'm attempting to have all bases covered so that when I'm recovering I can try not to stress about the state of my family and my house. Ha! As if!

Oh well, at least we'll all have clean sheets, chocolate chip cookies and a sparkling bathroom!

Asher Aftermath

Everyone slept through the night and Asher woke up almost 100%. The fever is definitely gone, and most traces of the rash were gone as well.

He is still tired, and quite stiff, so I know he's not quite there. But we had a nice NORMAL day, which was needed for all of us. We took big sister for a haircut (adorable! but no pics yet) and then I braved the grocery store with all three kids for the first time EVER.

We came home for naps and a very quiet afternoon and evening. Now all kids are beat so are headed right to bed.

Thank goodness, this drama appears to be over. And as it ends another begins...got all the details for my surgery today. It is indeed going to happen on August 2. A week today I will be down half a thyroid and up a nice big scar. Gulp.

To The Hospital and Back Again - Part 3

Sorry to keep stopping, I should have held off to write the whole thing until kids were in bed, but I knew some people were waiting for details! If you're just starting here, make sure you reads Part 1 and Part 2 of this story.

We arrived on the peds ward and they were expecting us. We got ushered into a private room and as soon as the nurse came in gowned and gloved I knew we were in isolation so I panicked. It took a few minutes to get up the nerve to ask why (I thought they were querying some weird contagious disease that they hadn't told me about) but when I finally did I was told that they isolate all kids with undiagnosed fevers to protect the other kids on the ward who are immune compromised. Phew. All in all, it turned out great. We had a room, and a bathroom, to ourselves, when I was prepared for a four bed ward.

After getting settled and assessed by our nurse, we saw the peds resident from earlier in the day. She reiterated that they wanted to observe Asher for the night to be sure everything was ok. Again she told me she thought it was very unlikely that it was Kawasaki, and she still maintained it was likely a virus. At that point Asher had a low grade fever so he got some tylenol and I put him to bed, knowing he would need vitals taken twice through the night. Thankfully he fell asleep quickly.

To The Hospital and Back Again - Part 2

To continue last post, we waited anxiously to see the pediatrician. In the meantime, I've realized that it is IMPOSSIBLE to keep three kids at the hospital by myself so I call in the reinforcements. Within minutes, my girlfriend has dressed her own two kids and hauled them off to come get my two (her husband is also on the boys weekend). It was nice for Rio and Nolan to get out of there, having patiently waited for a couple of hours, and nice for me to be able to focus on only Ashy.

Also, in the midst of this I get a text from another good friend (the one who talked me through the fever on Friday night) who is on her way to emerg with her own daughter. They end up just around the corner from us, but neither of us can leave our kids to say hello and offer support, so texting will suffice. Oh the texting! Thank goodness for cell phones.

Within a few minutes, a peds resident and med student arrive. They give Asher the once over. And by once over I mean poke and prod and ask every single question they could possibly ask. Sounds invasive but it was actually great. I knew they were getting every piece of info they could to try to make a diagnosis.

To my elation, they didn't think it was an allergic reaction. Yay! So Asher has now had two adrenaline shots for nothing, but hey, at least we're finally on the right track. The lab shows up and takes some blood, a nurse takes a throat swab, and now more waiting for blood test results and the pediatrician herself.

To The Hospital and Back Again - Part 1

Wow! What a weekend. And not in a good way. This is a long one to get into so I'll start at the punch line then go back for details.

Asher spent Sunday all day in emerg, then got admitted and spent Sunday night in the hospital. He came home this afternoon and all is mostly well.

Rewind.

Fever and Rash

Sorry, bit of a gross title isn't it? But that's what this is about.

On Monday, Asher woke up with a strange rash on his chest that spread to his entire abdomen. That remained until Wednesday, when he woke up from nap with a fever. Both of those are still here and the little guy is pretty unhappy.

We are fairly certain we can trace it back to his MMR vaccine (among others for 18 months), which was two weeks ago Wednesday. I looked it up online and the symptoms make sense. Of course, it appears that only a small % of kids react to this vaccine and yes, Asher is one of them! Because everything happens to our little Ashy! Unfortunately as of last night he has added a bit of vomiting to the mix, and while I think it's related, I don't think it has the same cause. I think he is just feeling so crappy that when he coughs or sputters he doesn't have the energy to stifle anything from coming up.

Jordan was up with him all night last night. To say he is miserable is all relative - miserable for Asher means he is weepy and clingy and incredibly sensitive. His CP symptoms are definitely worse - he is much more easily startled and his tone is very high. All that said, he is still smiling and talking and if you didn't know him you wouldn't even know he was sick. Cause that's how Asher rolls - rockstar through and through.

Fevers always stress me out, especially when daddy the nurse is away on an island for the weekend. Fingers crossed our little trooper is feeling better soon. We have house guests for the weekend keeping us company while the daddies are away, so hopefully this doesn't put a damper on the girls and kids weekend!

Super Soccer

Rio took soccer camp again this year. Same program, same age group, but I found it to be way better instructed. The coach was incredibly full of energy and taught the kids a lot of drills and team exercises, instead of just dribbling the ball and playing tag.

The week has been full of ups and downs. It started off so well, I thought it was too good to be true. I was right. After day 1 of Rio participating in everything, she started to get more and more shy. By day 3, we left 30 minutes in after she had not participated at all. Jordan took her yesterday and apparently it was a bit better, and thankfully today was the last day. It is a lot of effort getting three kids out the door by 9am, only to sit on the sidelines and not do anything! It was the usual Rio begging to do an activity, promising she'll do it, and then wanting nothing to do with it when the time comes. She is normally so good at sharing, but it was the biggest problem this time - she cried every time there was a chance she might "lose" her ball. But as for the actual skills, she was excellent, and strangely enough never shied away from anything difficult.

It ended up being worth it all when they finished today off with a real game. Rio was a-maz-ing! Running and playing so hard, and even scored a goal! So clearly she learned something! And of course the boys were angels all week. Every parent commented how "lucky" I am that they sit in their stroller. At first that comment used to stress me out, thinking "lucky" is not exactly the word I'd use to describe the non walking situation. Now I've learned to just smile and say "yes I am".

 Running machine

First real game - girls vs. boys. You can see how intense this is when the little girl running behind her is carrying a purse.

Teaching how to congratulate the other team on a good game. Apparently Rio told the coach "You don't do this every game, just in the Stanley Cup final". Ha! That's our little hockey fan!

Faithful Kev

Different baby, different door, same cat (although it's hard to tell by how much his hair darkened when he spent a year as an indoor cat).

Rio and Kevin - 2007

Nolan and Kevin - 2011

The Dog Days of Summer

Ok it's really not the dog days of summer, because that saying implies that a) it's HOT out and b) it's a lazy time. Neither of those are true, in fact it's the exact opposite: it's borderline cold outside, and we're run off our feet! Really, I just liked the ring of it for a post title, and maybe it's because I'm DOG TIRED.

Since I went away for my girls weekend on July 8, our family has not stopped moving. I returned home to a whirlwind week of wedding festivities, now this week this week we see off the remaining family before welcoming friends for the weekend while Jordan goes on his boys' trip. In the midst of everything, we still need to fit in real life including doctors, therapy and soccer camp. This month is flying by, and it terrifies me because that means that my August 2 surgery is right around the corner, then half of August is a write off, then summer is over and my baby is in kindergarten. Eeeeek! I can't deal!

Anyway, all this tired talk is a preamble to me having nothing to say, because I'm too tired to be creative! So instead, a couple of especially cute pictures.

Wedded Bliss

We've been very busy this past week with lots of family events and helping out in preparation for my niece's wedding. "You have a niece old enough to get married?", you ask. "But Tracey, you're so YOUNG!". Ha, I wish, I don't get that reaction very often. No but seriously I was a young aunt, first at 7 years old for her brother, and then at 9 for her.

The bride and groom live in NYC so lots of stuff happened in this last week that they were home. Reminded Jordan and I a lot of our "wedding week" and it was fun to be part of. Lots of hustle and bustle.

The wedding day was made extra special because Rio was the flower girl. At first she said no, then she said maybe, and then finally about 6 weeks ago she embraced her role. I am so glad because she couldn't have been cuter. We came full circle with Rio as my niece's flower girl, as thirty years ago, I was her parent's (my brother and his wife) flower girl at their wedding.

The wedding was beautiful and classy. The couple outshone the rain and the grey sky and it was an event full of love, family and friendship. What an amazing day for an amazing couple. Congrats Kaiti and Gio - we love you!

Beautiful flower girl

Stunning couple (under the wedding arbour Jordan and I made from birch trees in our yard)

Love

Much needed snack break when duties were done

 
Best behaved babies a wedding has ever seen

Cutest feet there

Jordan and I cannot take a decent photo if we try so had to include a candid

See note above. Had to go candid.

Yay! A decent family picture!

Photos by Rio

Rio has a kids camera and goes through big phases of taking a lot of pictures (her phases are essentially based on whether we have charged batteries or not). Her favourite subject is her brothers, followed closely by self portraits, and she takes some pretty cute photos. Here are a few of our faves...

Movers and Shakers

I had a friend recently point out that I haven't talked about the boys' crawling/walking lately so I thought I better update.

Nolan is cruising around furniture like crazy but still no independent walking. He is getting more interested in walking holding both hands but he is not at all keen to walk on his own holding just one of our hands. He has stood on his own for a second or two at a time, but only when he doesn't realize it. For how strong and confident he is, I actually think he is a bit of a nervous walker. Physically, we have no concerns however, he's just a slow poke. Fine by me. That said, the kid could set a world record with how quickly he can get around the house on all fours, so walking would probably slow him down significantly. And does he ever need to be slowed down. I need a separate post on what a menace he is. M-E-N-A-C-E. The likes of which I never knew possible.

Asher is doing great on the commando crawling. He can't get from room to room or any great distance but he can certainly get around small spaces to get to his toys. The combination of increased rolling ability and now the commando-ing makes it much easier for him to stay interested in play, and it helps to ease the frustration. It's certainly not easy for him however, and after a good session on the floor he is very hot and sweaty from his effort (is it terrible that I think that's ridiculously cute?). Sometimes he needs to just lie and take a break, and when he is DONE, he lets us know.

Both boys l-o-v-e music. Nolan is a crazy dancer and if he hears a song he likes he busts out into dance, even in his carseat. Of course it is not as easy for Asher to dance, so he does what we like to call "head dancing". When he hears a song he likes he shakes his head to the beat. I have been trying to help him shake his arms too, but he has yet to realize that he can move a lot more than just his head. Like anything with Asher, we'll give him some time to figure it out!

To close out, here's a picture of them nice and STILL - just the way I like them best! (They've both done a one-eighty to flip themselves to the foot of their cribs. And of course they've chosen to face each other - makes it easier for their morning chats.)

Girls Girls Girls

As I mentioned last week, this past weekend I took off for a girls getaway to the Kingfisher, a resort on the ocean a couple of hours north of Victoria. I was very nervous, having never left the boys, but also looking so forward to some me time. I was meeting up with my best friends from high school who I hadn't seen in three years (since the last time we did this.)

The weekend was more fun than I had even hoped. We laughed, ate, and drank - in excess. We relaxed at the spa, lounged by the pool, and chatted until the wee hours of each morning. Time flew by and as much as we missed our husbands and kids, none of us wanted it to end.

We live in 5 different cities, all have different jobs and interests, and have 12 kids between us, ranging in age from 11 months to almost 9 years. Any different paths our lives have taken melt away when we get together - they are the type of friends you can go years without seeing and you feel like you've never left them. There is something special about friends who you grew up with - who knew you when you were a child and now know you with your own children; who saw you with some pretty deadbeat boyfriends, but now see you happily married; who knew your entire family as well as you knew theirs. We have been together through thick and thin, and 20+ years later, I can say with confidence that the support we give each other isn't going anywhere.

I feel blessed to have these ladies as much now as I did when I saw them every day at 14 years old. Cheers to best lady friends!

Hot mamas!

I came home to a very clean house and a tired dad and kids who had a fun, busy weekend! Rio was thrilled to see me and I heard reports that she couldn't have behaved better or been more of a helper. What a girl! The boys on the other hand, couldn't stand me. Nolan laid off the cold shoulder right before bed last night, but Asher wouldn't look me in the eye until this morning. I kid you not. Thankfully, things seem to be back to normal today! Good thing, as we have an exciting week ahead, culminating with a family wedding on Saturday. Rio is the flower girl so you'll hear much more about that in the coming days. Have a great week!

Eye Update

At the boys last opthalmology appointment, we discussed our concern that Asher's right eye was turning out on occasion. We knew that strabismus and CP often go hand in hand, so we wanted a clear answer of what was going on. At that point, he confirmed our findings, but said it was very mild and that he was pleased with how well Asher was regaining focus and bringing it back to center on his own. (To put it in perspective how mild it is - most people, even those we have told, don't notice it. When it does happen it only just deviates from midline - does not turn out completely - and then centers again immediately. Jordan actually noticed it weeks before I did, to the point that I didn't believe him because I never saw it happening).

Anyway, at that time, the doctor said there was no way Asher was a case for surgical repair yet, given the mildness, but that because he has CP we could expect it to get worse, not better. And the fact that it was showing up before eighteen months (around the time it normally starts to become apparent) meant it would probably worsen significantly. Great. So we left that day keeping an eye on it (pardon the pun) and with a follow-up appointment with the vision therapist that works closely with him.

Both boys went to see her today - our opthalmologist was covering all bases to be sure Nolan was not also going to develop it (in case Asher was just born that way, and therefore as his identical twin, Nolan was too). I was very confident Nolan was not affected, but we trust this doctor whole heartedly so they both got checked out.

As expected, the vision therapist saw the strabismus in Asher. Very mildly though, and it required a whole battery of tests before she saw it. This was great to hear, as Jordan and I actually think it if anything it has improved and is happening way less frequently. She was very pleased with how well he regains focus immediately and how well his eyes track objects in all directions, and at this point again she said we just watch him and see how things progress.

Then she checked Nolan, and to our complete surprise, she saw it in him too. What?! That shows you how minor it is if we didn't even notice it. Also shows me that when you have a doctor you trust you should listen to them! There is absolutely nothing to be done with Nolan except pay attention to it and see if it worsens, which I don't expect it will. The funny thing is that it appears they were both born with it, but maybe Asher's is just worsened by the CP?

The good news in all of this (aside from the obvious fact that Asher's is not worsening!) was that eye glass prescriptions for near sightedness can also help with strabismus. Since both boys are near sighted and *may* need glasses in the future, looks like we might be able to kill two birds with one stone should that time ever come. How cute would they be in glasses?!

Anyway if you'll excuse me I'm off to count the minutes to my girls weekend tomorrow. More on that when I return!

Labels

Months ago, Rio began asking "Why can't Ashy {insert random physical activity here}?"

She is smart and she thinks A LOT (I wonder where she gets that from) so I decided that it is best to be honest but keep things simple. She knows that your brain controls your movement, so I told her that sometimes when babies are born really early their brains get hurt and that's what happened to Asher. So his brain has a hard time telling his body to move how it's supposed to. That answer seemed like a good one to her and after a few times of asking it never came up again.

Then it moved on to "Will Ashy ever {insert random physical activity here}?". That was a harder one to deal with. Again, I kept it simple, telling her that we hope so, and that all the help and therapy we give him is giving him the best chance to do all the things she and Nolan do. Again, she was pleased with that answer.

Today, she looked over at the counter at a book that was sitting on it and asked me what the book was called. I stared at the book and didn't answer, which was followed by a more urgent "MOMMY, what's the book called??".

Hmm. Here goes. "Children with Cerebral Palsy".

I stared at her. She stared back. Then she said "Oh". And then it was over. Phew.

In that moment I realized we have never used the words "Cerebral Palsy" to explain things to her. In fact, those words are rarely spoken in our home. Not a conscious choice to avoid the name, like Harry Potter's Voldemort, but really, what reason is there to say it? Asher is who he is, and that fact that he has Cerebral Palsy is just part of him, not a label we ever need to use to describe him.

But at some point, Rio's going to know what CP means. More importantly Asher is going to know what it means. And while we will do everything in our power to have him believe that his differences are unique and special and good, there will be times that being different - specifically having CP - is going to feel horrible.

So while it wasn't a conscious effort to avoid the label "Cerebral Palsy" in our house before, it just might be now. He has the rest of his life to be labeled. To us, he's just Asher, and he's pretty damn perfect.

Yes, I have my sister's barrette in my hair, and yes, I appear 

to be gagging on my dinner, but could I be any cuter???

More Gear - Stander

Recently, we've added a stander to our artillery of gear for Asher. We tried several months ago and his tendency to pull his leg up when exerting any effort made it pretty much impossible for him to stand, even in his gaters, so we didn't push it. But given how much he enjoys standing with our support now, we decided to give it another shot.

I know, it looks terrible. All of his stuff seems to. We joke that his corner chair is the electric chair and that this is the lethal injection machine (it looks even worse when he's not in it). Anyway, now that Asher is more physically ready for it it's a breeze to get him in and out. He used to fight getting the gaters on, and now I think he somehow knows they support him so he lies still and relaxed while we put them on.

Once in the stander, he usually lasts anywhere from 5-20 minutes as long as he has plenty of toys - picking them up for him when he knocks them off the table is a job in and of itself! But he really likes to stand and he seems to have more control of his arms when he's upright, so it helps him with play. Not only that, it helps him engage the muscles that need to be used for independent standing. Of course we are still very hopeful that can be achieved one day, so we want to do everything we can now to facilitate it.

I know when he's done because he starts to sit on the pommel between his legs. That tells me that his legs and core are tired. The more he gets used to it, the longer he seems to last, and the better position he keeps his legs and feet in the entire time.

He has so much "stuff" to put him in that I feel that none of it gets used enough. But I remind myself that every little bit helps.

Happy Canada Day!

Today the family enjoyed the neighbourhood Canada Day festivities, including the world's smallest (and lamest) parade, an outdoor market, and best of all - a pancake breakfast! We're home now for naps then contemplating heading downtown this afternoon/evening for more entertainment and food. We shall see - one outing per day with three kids may just be enough!

I love Canada Day. A day to get out and celebrate this fine land in which we dwell. A place where water is clean, healthcare is free, gay marriage is legal, and the closest we come to civil unrest is rioting after losing the Stanley Cup.  We have the most diverse landscape in the world - ocean, mountains, forests, prairies, desert, lakes, frozen tundra and ice. Untouched nature is just minutes away from our most booming metropolises (metropoli?). Sure, we're not perfect. Our system of government allows us to elect a leader that the majority of us did not vote for. Our jails are overrun. And...seriously I have been sitting here trying to think of another negative...and I can't. Apparently we have it good.

Happy Canada Day my fellow canucks. God keep our land glorious and free!