Daily/Weekly Thoughts
Daily/Weekly Thoughts

January 2017

I'm a Man!

Emmett, are you an elephant?  Vigorous head shaking to indicate No!

A cow? A bear? A doggie? Same reaction, including verbal sounds that are absolutely indicating disagreement.

A kittie cat? Looks at Wendell and same reaction. Wendell, of course, is his cat.

A girl? Same reaction.

A boy? Same reaction.

Of course, this is where you as a wise reader would be shaking your head and going 'tsk tsk, what are those parents teaching their little child!' but it really is not the parents.  Emmett has trucks. He has cars. If you remember, his favourite game is to throw things onto the floor for people to pick up ... simply to have them tossed to the floor again. Except for his cars and trucks, which he will play with for extended lengths of time.  Of course, he has lots of stuffed animals and he has a purple helium balloon elephant called Ella (we think Ella is now maybe seven months old! They recognize us and laugh with us when we stop at the party store for helium refills!). Emmett even has a doll house (hmmm, he doesn't have many dolls!)

When he goes outside he is really demonstrating that he is a little boy. He was just at the park and we are really noticing his independence. In 2016 (doesn't that sound like it was a long time ago) Emmett would usually follow his mom or dad (or grandparents) fairly closely when he was out with his wheel chair. He would stay in the same room as the adults. Now, however, his independent character and his stubborn streak is showing itself. He will simply leave. He may start to follow you but if he decides that somewhere else is more intriguing than where you are going - he will go the other way. Or if you ask him to stop beside a January flower - so that you could photograph his smile as he touches the flower in the hope of making everyone else who is stuck in the midst of winter doldrums envious of the springlike weather coming to the Fraser Valley - and rather than stopping he does a 180 and heads off in another direction!

It started in the house when he would just leave the room. Outside, what started as stopping and simply looking elsewhere has progressed to literally heading off in another direction and expecting/knowing (hoping?) you will follow him. And of course, you do because you cannot let a kid who is not even two years old drive his electric wheelchair down the road without adult supervision. That would be wrong (Let alone the need to be close by in event that suctioning is required). So you follow and catch up to Emmett and then you have a discussion about why you should be going the way that you, as an adult, want to go. Sometimes you lose and you go where Emmett has planned. But perhaps you will stand firm and dictate the direction! Last night, for instance, we were heading out to load the wheelchair into the van and then off to grandma's house (grandpa's too!). Emmett decided he wanted to go for a walk so he sailed past the van. I steadied his head as he rocketed over the bump from the driveway to the street - it is maybe an inch but at rocket speed [I'd guess maybe 1.5 mph]  that is enough of a bump to cause Emmett's head to be jostled beyond his ability to control it. Obviously at 1.5 mph he is not going to get away. Even at the fastest 2 mph that he is allowed to control on his own, any adult is able to overtake him rapidly. But that doesn't stop him from attempting a get away. And then, possibly in the middle of the street (there are no sidewalks in their neighbourhood so the chair has to be on the street for walks) you are having a discussion with a 22 month old about why they cannot just stop in the middle of the road, why they should go back to the driveway so that we can load up the van, and why they are going the wrong way. With so many why questions in a row, it is no wonder that two year olds most frequently asked question is why!

Well, I couldn't convince Emmett to do what I wanted and needed him to do, so that meant that I needed to wrestle the controls from his grip. You see, I can simply turn the chair off and then Emmett cannot move. If you've ever tried to push an electric wheelchair you'll realize that is not a reasonable option (of course, you can disengage the drive wheels and then pushing is easier). So rather than shut off his chair, Emmett and I wrestled for the controls ... I won. Emmett cried. After all, he is just a toddler and he always wants his way. Of course, he forgot this and the cries changed to smiles as we went superfast back to the van (probably 3 or 3.5 mph). The chair only goes superfast when it is in adult mode and controlled by the joystick on the rear handlebars. Emmett may not like losing control, but he absolutely loves going superfast. Then back into the driveway and loaded up for grandma's house.

Another sign that Emmett is all boy was when we were at the local park. In 2016 when Emmett was still in his teens (months, not years) Emmett would stay on the path and be very conservative with his new chair. Now that he's in his twenties (months, not years) and the chair is just over six months old, Emmett has become a trail blazer. Off trail driving is his focus. Over tree roots, up and down hills, and then heading from the turf onto the woodchips of the playground. At our local park this is quite an elevation change of probably 6 to 10 inches (15 to 25 centimetres) which truly would have caused Emmett's head to lose control. Of course, supporting his head while also supporting the chair can be a bit of a handful. This chair is awesome but it is absolutely designed for flat terrain. Plus in this springlike weather the chair might make it down the incline easily but couldn't find any traction on the way up and out of the woodchip playground - so a good push is necessary.  [Time for the mini-activist in me to say that playgrounds should be developed with wheelchairs in mind. And I'm feeling guilty, because I helped in the design of two or three school playgrounds and I know now that they weren't as wheelchair friendly as I would now like to see!]

So Emmett will not acknowledge that he is a boy. Ask him if he is a man, however, and he will give you the strongest and most absolute verbal acknowledgement that you got it right. Our little boy Emmett is already identifying as our little man! Make sure you get it right!

Now, here's a video of our little man. Watch it and cheer our little man on! If Emmett could talk, I think he would be saying "Dr. Selby! Nella! Look at me!"

Thank you for the notes and email! It means a lot to us. Whether you're in another part of Canada, Australia, the United States, England, Ireland, or another part of the world. Thank you for your interest and support. And if you are a part of our extended SMA family - our love goes out to you and we pray for strength for your family as you are fighting for your little one - just as we are fighting for Emmett!

Comments

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Guest Comment 4 months ago
Site Visitor
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He is so cute! Love hearing how he is doing. xo Aunt CA, Uncle J
Guest Comment 4 months ago
Site Visitor
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Poor Comment Good Comment
Following instructions! Well done, Emmett! What fun that he has his moments of independence, with you following. We cheer you all on. May 2017 be one filled with joy, good health and many milestones for you all. Blessings from Bob and Luella.

Million Dollar Baby

Every child is a priceless addition to a family and there is no question that Emmett is absolutely a treasure. He is our million dollar baby! January 9, 2016 he celebrates a huge milestone. He is officially 22 months old. In this past month he has come to adore his cat, Wendell. He loved Christmas and couldn't get enough Christmas presents - signing 'more', 'more', and 'more'. Then he played with the boxes and wrapping paper and forgot about the contents of the packages. He can "Ho Ho Ho" with the best of them - maybe even better than the jolly old man himself!

There has been a bit of cabin fever going on in Abbotsford, as Emmett hasn't enjoyed being outside when the temperature is below zero. And since the snow has not left, he gets quite frustrated. You see, his wheel chair has absolutely no ground clearance nor snow tires so if he attempts to head across the lawn he gets stuck. He is a very bright little boy, but he knows that he can drive his chair on the lawn so that what he tries to do. But there is 15 cm of snow on the lawn. It just doesn't work! He's been to both grandparents' homes. He's been to the swimming pool. The need for caution on outings is even higher right now as there is a terrible flu going through the area - lots of sanitization and cleaning going on! So as you can imagine, cabin fever is very much a factor for the Willms' family.

Emmett loves knocking blocks, toys, and anything he can onto the floor. He then appreciates someone picking them back up for him - so that he can do it all over again. When is this going to stop! Also, right now he is a drooling little boy because it appears that he has a million teeth that are all trying to appear at the same time. He loves his power wheelchair and every day his driving control gets better. He loves to play hide and seek - except he always wants to be the one who is seeking. When he finds you he will drive up and bump you with his chair so that you know he's caught you. Obviously, you have to play the game in a reasonable manner so that Emmett can find you and then also get to you! Roger got a video of him in fast forward - which is often how it feels like he is moving to us as we try to keep up with him.

Emmett is also a million dollar baby because the suggested price for a first year supply of Spinraza, the drug that Emmett has been receiving, is a whopping $750 000 USD or $1 000 000 CDN. The number of doses required reduces for the second and following years with the suggested price being $375 000 USD or $497 000 CDN. Shakes you to the foundation of your being, doesn't it! Emmett is still involved in the trial throughout 2017 so all costs are covered by the pharmaceutical company. The drug has not yet been approved in Canada - only in the United States - so there are still many, many questions to be answered.

If you're asking how a drug can be so expensive, Spinraza is literally building new pathways for messages to travel via the nervous system. It is mind blowing what these scientists have developed. We simply hope that once production begins in earnest that the price changes drastically.

After a few months of working with balloon refills, it's time for a new balloon. Ella the Elephant and her free refills have been great - and Ella has become part of the family - but she can not hold her gas very well anymore. Neither can Nemo the Clownfish. And since Emmett doesn't really like the air swimmer idea, we'll save the shark until he is older. So Monday Morning it's off to find Emmett a new balloon. I think our local store has some Paw Patrol ones! That is the theme that happened this Christmas. Paw Patrol toys. Paw Patrol books. Paw Patrol Jammies. Paw Patrol shirt. So it's time for a Paw Patrol balloon and we'll all sit and watch a few episodes of Paw Patrol!

Comments

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Guest Comment 4 months ago
Site Visitor
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I love the video of Emmett careening so confidently around in his chair. As one who can't even control a shopping cart, i am immensely impressed! I hope you are enjoying the warmer temperatures!
Frank Ewald 4 months ago
Site Visitor
Poor Comment Good Comment
Well, in your defence, shopping carts don't have motors or joystick controllers!