Monday, March 31, 2014

Budding Author

Rio has recently gotten very interested in writing short stories. Only makes sense because she's an absolute book worm and has her nose either buried in her book, or her pens and papers, non-stop.

During spring break she wrote two stories that she asked me to type so she could make them into a book and bring them to school. Although I did the typing and helped her with a wee bit of spelling, all of the content (including punctuation and grammar) are hers. Shared with permission from the author, of course.



The Cheesecake Mystery
By Rio Trousdell

Once upon a time there lived a little boy whose name was George. George loved cheesecake. His favourite kind of cheesecake was the kind his mom made for dessert. But one day when his mom was in the kitchen George asked his mom if she could make some cheesecake for dessert and this is what she said.

“No”.

“No?” said George.

He was surprised. His mom never usually said no to cheesecake.

“But mom…” said George.

“I am sorry George but wouldn’t it be nice to have something different for dessert?”.

“I guess so”, said George sadly.

Then he went up to his room and read a book to get his mind off things. When he was reading his baby sister Ella started crying. Now, it was pretty hard to read. But soon she stopped.

“I wonder what made her stop?” thought George.

But then he thought of something. Maybe his mom didn’t want to make any cheesecake because she didn’t have all the ingredients and maybe Ella stopped crying so soon because his mom fed all the cake to her. If you put it all together it makes sense. That is where all the cheesecake went.

“Mmmmm”, said George hungrily.

So he went downstairs to ask his mom if his answers were right. When he got downstairs this is what he asked.

“Mom, did you not want to make cheesecake because you used up all the ingredients to feed Ella?”

“Yes” said mom.

“And can you go shopping?”

“Yes!” said mom again.

“And can I go with you?”

“Yes!” said mom getting pretty annoyed.

So they went shopping and this is what they bought:

· Cream cheese

· Sugar

· Eggs

· Butter

· Graham crackers

· Chocolate

When they got home they made cheesecake then shared it with their family. And that is the story of the cheesecake mystery.

THE END!!




Finding Spike
By Rio Trousdell


Once upon a time there lived a little monster. This little monster’s name was Prickle. Prickle was very prickly and he loved his prickles. But what he loved most of all was his pet Spike the porcupine. So one day when he was playing with Spike his monster phone rang.

“I wonder who that is?” thought Prickle as he got up from his chair to see who was calling.

“Prickle here” said Prickle.

But no one answered so he hung up. Then he went back to his room to play with Spike. But when he got there the door of Spike’s cage was open and Spike wasn’t in his cage.

“Oh no!” said Prickle.

He was so scared. Spike was his favourite.

“I have to go looking for him!” said Prickle.

But how? How was he going to find Spike?

“I have an idea!” said Prickle. “I can ask Zoom if I can borrow his bike (Zoom was one of Prickle’s friends).
So he went to Zoom’s house and asked Zoom if he could borrow Zoom’s bike to help him look for Spike. Zoom said yes, so Prickle took the bike and off he went pedaling so fast you could only see a blur of blue and green (Prickle was blue and green).

When he got to the woods he stopped because this was Spike’s favourite hiding spot. Prickle looked around and then out of the corner of his eye he saw something prickly. Was it Spike? Did he really find Spike so soon? Then when he got a little closer he saw Spike!! Spike was all curled up in a ball and he looked cold and hungry, but most of all he was soaking wet! It was pouring rain. Prickle was so happy he had found Spike that he hadn’t noticed that he was soaked from head to toe with freezing cold water too but he didn’t care. He was just happy he found Spike! And that is the story of “Finding Spike”.

THE END.

***

Ok, I know I'm her mother - but pretty cute, right?!

Tuesday, March 25, 2014

Asher's CP Awareness Reminder

Today is CP Awareness Day. As I said last year, our awareness comes in just being. Our family rocks CP (or at least I think so) and hopefully that in itself helps to take away some stigma around disability. 

Pretty fitting, however, being CP day, that Asher decided to show off some fancy moves in therapy and give me my own little gift of CP awareness. 

First, I give you the W-sit:


And then criss cross applesauce


In case you don't understand the significance of these photos, I'll state the obvious:

He's sitting.

Independently.

No one is holding on to him.

Go back and look at those two pictures again, and then let me repeat:

ASHER IS SITTING INDEPENDENTLY!

Sitting is something in the past we pinned a lot of hope on. "If he sits by two he'll likely walk". "If he learns to sit, then maybe he could learn to….". "XYZ would be so much easier if he could just sit". 

Then about a year ago I kind of said "sitting schmitting". What's all this fuss about independent sitting? I realized that the world would not end if he couldn't sit unassisted, as much as it would be nice if he could. We continued to work on sitting in therapy but it stopped being the be-all-end-all goal. 

Over the past few months of therapy, Asher has started to show small gains in prop sitting (holding himself up with his arms in w-sit, like in the first photo). While his core is the most affected and therefore makes holding his trunk upright the most difficult, he can use the tone in his arms to his advantage to "lock out" so to speak, and help hold him up. W-sitting is frowned upon in most cases because it's not good for the child's hips; however, it is the "easiest" and most stable sitting position (and one Nolan chooses 9 times out of 10 much to our chagrin). Because of the stability and the chance for Asher to use his arms to help him, w-sitting is something our PT has been supportive of pursuing with him. The first time he held himself like that for a count of 5, I thought it was the most exciting thing I had ever seen. Over time he continued to do it off and on, but not with much consistency. Some days he could do it repeatedly (up to about 10 second increments) and other days not at all. 

But today I looked over at him with his PT and he was in w-sit, propping himself up like nobody's business. After 5 or so seconds I wasn't so excited because I'd seen it before, but as the time kept ticking by and he just kept sitting there, I started to realize I was seeing something monumental.

Therapy continued and when I was more focussed on Nolan, I heard his PT quietly call me and there they were, reading a story in perfect criss cross. This time, I nearly lost it. Criss cross, not w-sit. Asher never sits like that. And by never, I literally mean never. But today he just sat there. Get it? Just sat there, like it was no big thing. If I said he held it for five minutes, that would be a big lie. But two minutes? Maybe. TWO MINUTES HE SAT BY HIMSELF.

As I write this, I am having trouble processing it to be honest. Does this mean that all of a sudden Asher can just sit without a whole ton of work? No, absolutely not. That is not me being negative, that is me knowing how much work it's taken us to get to this point - four years in fact. I also know that if we try again tomorrow, the result may not be the same. 

However, what I am sure of is that if we keep trying it will happen again at some point, because it happened today. Do I believe that if he continues working on it, an independent sit for a minute or two on a more regular basis might be in the cards? Absolutely yes, I do know that now.

What Asher did today gave me an all important reminder - not just CP related, but for life in general:

Never give up. Always believe in possibilities. Expect miracles.

Friday, March 21, 2014

Tales from the Vault - Diagnosis

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.






This post was published exactly 3 years ago today, on the day of Asher's CP diagnosis. Seems like a lifetime ago now. I wish the family that received the news that day could see the family that we've become. Since that day, we've all grown in ways I can't even put into words...

---

I'm not going to beat around the bush about the results from our appointment today.

Asher has Cerebral Palsy.

Cerebral Palsy is a non-progressive brain injury. The damage was done when his brain hemorrhaged shortly after his birth and it has not worsened since; however, as he develops, we will see more and more of what he is capable (and incapable) of doing.

This diagnosis is not a shock to us, I promise you. I'm sorry if it is to you, but the signs have all been there and we have not hidden them. Since his problems at birth, we knew this was a possibility. At a couple of months old, we realized it was probable. In the past few months, we accepted that it was inevitable. We knew that this diagnosis would come at today's appointment and we were ready for it, as ready as you can be anyway. I am tired of telling people he is delayed or has "muscle issues". I am ready to make people aware.

Asher is not delayed - delayed implies he will catch up. He won't. With continued therapy he will improve his skills, but only time will tell how much. His right arm is very weak, his left arm is less than ideal, and his legs are tight, but hard to tell how much function they have. Currently, our biggest concern is his core. He is very floppy, still nowhere near sitting.

Until he is two years old he will not get an official diagnosis of type of CP because the doctor wants to observe him and see how he progresses in that time. She does want to send him for an MRI as he isn't "fitting the box" of typical CP patterns, making his type harder to diagnose. She thinks he may have Athetoid Cerebral Palsy, characterized by fluctuating high tone (tightness/stiffness) and low tone (floppiness), however he isn't showing some of the other symptoms of that type, namely issues with talking and swallowing. The damage shown on the MRI will help her with the diagnosis and in turn, treatment.

At this point, she put him at a 3-4 out of 5 on a severity scale. 1 is the best - minimal problems, and 5 is the worst - in a wheelchair with no speech and head control. [Update 03.21.2014 - Had I written this now I would never have used the words "best" and "worst" to describe numbers on the scale. I should have worded it more like "least motorically affected" and "most motorically affected". Semantics, I know, but that kind of thing matters to me now.] Knowing she has absolutely no way to predict the future, I asked her what a 3-4 means. She said walking with a walker and maybe a wheelchair for long distances. The best indication of walking ability is sitting by age 2. That gives Asher almost a year (corrected), so that is our first goal.

You're probably thinking this is all pretty crappy, right? Well yes, I suppose it is. But here are some positives to count on:
  • Everyone feels confident that Asher is not congnitvely impaired in any way. He is smart as a whip, social, happy and completely in tune with people and his surroundings.
  • He has proven himself a miracle many times over. Why not again? Not saying he is going to come away from all of this "cured" - not at all. But saying maybe that 3-4 out of 5 on the severity scale turns into a solid 3, edging closer to 2. That can happen, right? [Update 03.21.2014 - Asher is solidly a 4 on the GMFCS scale. But you know what - that's ok! I might not have known that three years ago but I know it now! A number doesn't define Asher's capabilities.]
  • He is motivated. That cannot be taught. As long as he has the will to try, his possibilities are endless.
  • He has all the therapy he can take advantage of and we are doing everything right. Nothing will change because of this diagnosis. If anything, the answers can only make life better from here.
  • He is loved and supported by more people than we can count. So please do not think of it like this is the worst news we have ever heard because it's not. The last thing we want, for Asher our ourselves, is pity. Certainly not to our faces, nor behind our backs. Asher will have to work harder, without question. We all will. But we will all be better, stronger people for it. We are going to raise three kids who see the world with a lot less prejudice than the rest of us do, who are more empathetic to others, and who have strength that I have no doubt will amaze me daily.

We are blessed, CP and all. It may be Asher's diagnosis, but it is not his definition. He will do great things, mark my words.

Monday, March 17, 2014

Holding Hands and Building Houses

Recently Nolan has become enraptured by Lego. Not the new-fangled kind where you have to build exactly what is on the box, but the old-fashioned bricks that you actually have to use your imagination with.

He has been working on different iterations of one building for days. It's a house, it's a castle, it's any number of buildings really, and changes configuration based on what the kids are playing. At this very moment, it's a penguin's house, complete with a bed. While I've marveled at how much fun he and Rio have had creating together, I've felt a little sad for Asher, who sits on the sidelines with a few bricks on his tray. I know he's happy to observe but it's difficult for me to see the other two being able to play so intricately together when Asher doesn't have the dexterity to keep up. They try to do their best to include him, but sometimes I wish they would do more.

The other night after a session of building that I hadn't been watching closely, Nolan excitedly called me over to say: "Look Mama, I built our house for Asher. It's got an elevator and a wheelchair!".


He was bursting with pride, and so was I. He thought to make this all on his own, and he was sure to let me know it.

How's that for inclusion?

***

A few days later, walking home from preschool, I was thinking about the lego house and what it means. Just as I was lost in another world of thought, Nolan stepped off his perch at the back of Asher's chair, walked up beside Asher, and put out his hand to hold it. It took Asher a solid 30 seconds, or more, to be able to control his arm enough to grasp Nolan's hand, but Nolan didn't falter. He stood there, with his hand outstretched in a place Asher could eventually grab it, and waited patiently. Once the connection was finally made, they walked hand in hand to the end of the playground. No words spoken, not even looking at each other, just joined at the chubby little hands.

How's that for a connection?

***

These children are brilliant in so many ways. IQ, maybe, but I'm talking EQ. These guys - all three of our kids - get it. They are wise, they are empathetic, and they understand people. In many ways, Asher and Nolan don't have the "typical twin relationship" I had dreamed of because circumstances make that more difficult for both of them. But now through the simple acts of building a lego house and random hand holding, I have no doubt that the the bond is there, even if it sometimes looks different than I had imagined.

How's that for the twin relationship you dreamed of?

Wednesday, March 12, 2014

Tales From the Vault - Waiting for Grey

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.




I originally wrote this one in May 2013 after a particularly "down" period. I still feel this way sometimes, and for the record, I still wish we could run away to somewhere tropical. Here you have it below, and also shared on the Monday Coffee book blog as another guest post. 

---

Some days, I wish I felt more grey.

I know, "grey" doesn't sound like the greatest feeling to wish for. It conjures up images of sadness or moodiness or indifference.

But that is not what I mean by grey. For me grey means middle ground. Even keel. Neutral. As opposed to the black or white extremes I often feel.

At one end of the extremes, there's guilt. I am laden with the feelings that I don't do enough for Asher. Nothing is ever enough. I don't do enough exercises with him, I don't stretch him enough, I don't make him walk often enough, I don't try to get him to crawl enough, I don't help him enough, I don't challenge him enough. And on and on and on. Long story short: "I don't _____ enough". Fill in the blank with any of the things we are supposed to do with him. Talk about overwhelming and disheartening when you think about all of the ways you could be doing better and more for your child with a disability (or any of your children for that matter).

Thinking I'd be inspired, I just finished reading a memoir written by a mom whose son has severe CP. At birth she was told he would essentially never see, move, or know who she was, but she didn't believe it. Through an unbelievable amount of work and persistence, she did therapy with him non-stop all day, every day, and he is now able to talk, eat, see, and walk with a walker. It is truly extraordinary. Now granted he was her only child, and in the process her marriage did end, but you have to give her and her son a ton of credit for what they accomplished. After reading this, however, do you think I was inspired and given hope by the brain plasticity of a child and the sheer will of his mother? No, not really. Instead I just felt inferior. Like if I tried a little bit harder, Asher would be scaling Mt. Everest. Ok not quite, but you get what I mean.

Then, away from the guilt, there's the other end of the spectrum: apathy. Sometimes, I just wonder what we're doing it all for. I see our boys work their hardest in therapy but I don't see a ton of tangible differences. I look around our house at the mounds and mounds of equipment, and wonder what good any of it is doing. Some days I wish I could take my family and run away to a tropical island and just live. No therapy, no equipment, no big bad world full of judgment and prejudice. Just us. Safe. At peace. Away from it all.

On the days I am able to remove myself from the black and white extremes, everything in the shades of grey becomes a little bit clearer. I know that I can't do it all. I know that I have three children, all equally deserving of my attention. I know that I have a marriage that needs to be a priority. I know that I am only human. I know that my family is loved, and more importantly, they know they are loved. I know I am doing the best I can.

So on the days where I'm feeling black, or white, or sometimes a bit of both, I do what I've always done since having the boys - I just ride it out. I cry. I eat chocolate. I cry a bit more. I talk to my husband. I talk to girlfriends. I blog about it. And then I take a deep breath and know that this too shall pass, and the clarity that comes with feeling grey will be just around the next bend.

Tuesday, March 11, 2014

Furniture Placement

The other morning Rio crawled into bed with me after Jordan had already left for work, but before her brothers were awake. As we do when that situation presents itself (not very often these days that she wakes before the boys), we began to chat. Lying in bed staring at the four walls of my bedroom, the conversation turned to our home renos, and what this bedroom will be like when it's hers (because Jordan and I are switching rooms with Rio).

She immediately focussed on the placement of her bed. Jordan and I are limited because we have a queen sized bed and with the location of the window, closet, and door, there was really only one place to put it. But Rio has a double, so she has more options. I pointed out one corner, I pointed out another corner, I pointed out a different wall, and then I suggested she put it just where our bed is.

She looked around the room thoughtfully for a moment before saying "Oh mama, I would never put the bed where yours is". Before I had a chance to ask her why, she continued. "I have to put the bed in one of the corners so it's easier for Asher to get around. My bed would totally be in his way if I put it here".

Nearly speechless, I said "You're right Rio, good point". But what I thought immediately after was more along the lines of "Rio, you are the best, most thoughtful, wisest sister in the entire world."

You see Rio knows this reno is to accommodate Asher's wheelchair. We adults have carefully planned the layout of the house and yes, that will even carry through to furniture placement in the shared living areas. But her bedroom? Sure, when the time comes, we will encourage her to put her furniture in places that will allow the most space for Asher, but are we thinking of her bedroom now? Absolutely not. She is though, and that is what makes her the amazing girl she is.

When I try to say that Rio could not possibly be a better sister/advocate/friend/hero to two little boys with a disability, I never seem to do her justice. I hope this simple example begins to.

Not exactly a current picture of Rio in her bed (or even in her current bedroom), but I couldn't resist!

Friday, March 7, 2014

New Driver on the Road

Asher's been driving, and I finally brought my camera to capture it. Take a looksie:





What do you think? It may not appear to be as much work as it is, but I can assure you that at the end of a 20-30 minute lesson, he is SPENT. How he is moving his hand to control the joystick seems fairly effortless but I cannot even imagine how much effort he actually requires to do that. Do you see how supported he is? A seatbelt, two straps on each foot, a four point chest strap, a homemade chest/arm support vest to help keep his arms near to his body when his tone kicks in, and a tray - all of those things required to keep him upright, comfortable, and feeling in control. I wish it were as easy for him as hopping in the chair, controlling the joystick and taking off. But if that were the case, I guess he probably wouldn't need a wheelchair, would he?

Another challenge is that this is his first time experimenting with self mobility - so he gets distracted EASILY. He is supposed to be concentrating on driving, and he knows that, but it is just so exciting for him to be able to explore that his "crashes" are often the result of him fixating on things other than his driving path. It's understandable, of course, so we need to find better ways to keep him motivated by the task at hand, at least more so than all of the distractions around him. It's all a balancing act between giving him some freedom, but at the same time actually improving his driving skills.

I am so, so proud of him. All we hear from our OT is how much he "gets it" and how well he is doing, even though he has a long road and a lot more learning ahead of him before this is his main mode of transportation. Thank goodness there's many more lessons in his future because I think it's going to be a while before I let him anywhere near my baseboards and door frames!

ps - Notice he's got the headlights and four way flashers on? He'd be honking the horn non-stop too, if he had his way.

Wednesday, March 5, 2014

The Word

Today is "Spread the Word to End the Word" day. The word I speak of? "Retard", and all of it's incantations, like "That's so retarded". I have nothing profound to say that others haven't already said, so instead I will just say one small thing: Stop saying it.

You are better, and smarter, and kinder than you are when you say that word. I know you may not mean to disparage my child, or any other person with a disability, but that's not a good enough excuse. Stop saying it all together. I did, and so should you.

Monday, March 3, 2014

Tales from the Vault - Once a Micro-Preemie...

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.



This post was originally shared in July 2012, right before we embarked upon a 3 week road trip to the States. When looking through the old blog today I thought it was fitting because I realized the fears I describe below still haven't really left. Just a couple of weeks ago Asher had a nagging cough and I had to continually convince myself he was fine (he was). Asher and Nolan have proven time and time again that their lungs are as strong as any four year old's (and this has been confirmed time and time again by doctors) but all those months of seeing them breathe by machine evidently can't be erased from my memory.

---

Yesterday Nolan had a trip to the doctor to check on a nasty cough. Long story short, an x-ray revealed pneumonia so he has antibiotics and a puffer. If all goes well, he will be better before we go on our trip.

As concerned as I was about this I sent Nolan to the doctor with Jordan, not me, with a laundry list of questions:

You'll tell him he was a 26 weeker, right?

And that no one else in the house has it?

And especially that his twin brother whose face he breathes in all day every day doesn't have it?

And that he just had the stomach flu and we found him flat, face down in his vomit?

It IS possible that he aspirated, right?

And that we're about to head on holidays to the States?

With an eye roll and a "Yes, Tracey", Jordan took off. Why didn't I just go?

Because whenever the kids get sick I get so emotional. Every time I need to say "He was a 26 weeker, he was on a ventilator for 6 weeks, he had chronic lung disease, blah blah blah" everything comes flooding back. When he had hand foot and mouth disease I cried to the doctor for God's sake!

But here's the thing. On a daily basis we are no longer reminded about the prematurity (well except for that pesky CP). We have been INCREDIBLY blessed by the fact Asher and Nolan have never come down with a [lung] virus that has landed them in hospital, nor have they had any sort of sickness that out of the ordinary for any kid, much less a micro-preemie.

But when they do get sick, my wheels start turning even more quickly than normal. I remember that as strong as they are, as good as their immune systems have become, and as "pristine" as their lungs are (a doctor's word, not mine), their health, even at 2.5 years old, can still not be taken for granted for a few more years. This time, Nolan was barely sick. In fact had our upcoming trip not been just days away, there is no way I would have taken him to the doctor at this point, or even been concerned. Thankfully we did and it was all caught quickly. Let's call in mother's intuition coupled with a doctor who took our concerns seriously.

It is a fine line with preemies between over reacting to sickness, and not reacting quickly enough. So far we've always made the right decision. Once a micro-preemie mom, always a micro-preemie mom. The boys have healed, and will continue to heal. Not so sure about me.