June Updates | Daily/Weekly Thoughts
Daily/Weekly Thoughts

June Updates

Emmett has been playing RV all winter and spring. In just a little bit Emmett and his mom and dad are going camping with both sets of grandparents. It will be an awesome time for this little one who so loves camping and time in the RV. We will give you an update on camping in our next blog post. This post is about Emmett and his athletic escapades. First off check out Emmett as he expresses an interest in baseball. In previous years he has come to games but hasn't shown any interest. Not so this year. So his daddy, Uncle Ben, Aunt Alesha, and a bunch of friends from Level Grounder's baseball game helped him experience a game.

Emmett has also been really working hard at sitting up. And that includes swinging!

Sometimes kids ask Emmett why his mouth is open. That is something that he wants to show you that he can now close, but he wants you to know that it takes a lot of muscles and a lot of work to keep his mouth closed. (We love his expression!) So Emmett will often have his mouth open! That's just one of the little challenges that SMA causes.

Emmett wants to be a helper when he grows up. Here he is checking out Cliff to ensure that he is healthy and happy. Emmett also likes going outside for picnics with Ted E. Bear. As long as he doesn't have to touch grass. Emmett still doesn't like the feel of grass and is not really sure that he appreciated when his grandpa (yes, that would be me) took him out and lay him down on the grass. First to look up at the sky and see shapes in the clouds. Then another day to lay down on a hill to watch grandpa roll down a hill ... however since grandpa lay Emmett down on the grass on the hill it was actually Emmett who rolled down. And then when I picked him up and set him down again, it was still on the hill so he rolled down again! And it was awesome to hear him giggle. But if you ask him, he will tell you that he doesn't want to do that again (but he did whisper to me that I could roll him on the hill again, he just won't admit it out loud! Ha ha ha!)

So Emmett has decided that he wants to be a helper when he gets bigger. I have to tell you that he already is a helper. He helps everyone who spends time with him appreciate life so much more. When you see his expression as he realizes that he has just completed something that he has never done before, you cannot help but appreciate the everyday things that you do without even thinking about it. Simple things like closing your mouth and holding your lips together! When you hear him giggle as you climb up creative playground equipment and then slide down the slide - or maybe even going down one of those twisty, enclosed tube slides with your grandson and getting stuck in the middle of it (and hoping that you get out before Alisha or Josh find you there with their son!) as he laughs and calls out 'Again! Again!), then you find enjoyment in so many more things. (Emmett and I weren't really stuck, I just stopped us so that I could rearrange both of us so that we exited the slide in a dignified manner.)

 

Emmett loves his cat, but there's certainly something wonderful about being able to take Lucy, Grandma Willms' dog, for a stroll! Emmett absolutely loves animals.

Sometimes Emmett watches baseball from right behind the backstop netting. Other times he sits with his mom and grandma and friends. Other times he forgets about baseball and heads over to the playground to do some playing. Here he and grandpa were testing out a spinning thing. Grandpa got dizzy. His friends wondered why he couldn't walk and needed a wheelchair. This spring Emmett has been going to Sunday School and playing with the kids. It's a great opportunity for him to get out! Life is a balance between heading out and exploring and staying safe. Obviously, there is sanitizer everywhere at our church and the kids are great at using it. If there is someone who is obviously dealing with a cold, then we have to leave or steer clear. The church sent out a lovely letter to all of the parents in the Sunday School class about how illnesses can be extremely challenging for Emmett (for that matter, for new borns and elderly and lots of people in between) as they assist us in trying to stop the spread of germs. It is a learning opportunity for all of us.

Daniel Tiger is a great incentive to stay on his tummy and hold his head up. Otherwise, he cannot see the screen to know what is happening to Daniel Tiger! 

While spending some time at Canuck Place in Abbotsford, Emmett got to check out a McLaren. It got his approval! Emmett loves his wheels. In the next post we hope to tell you about the next chair modification, a seat cooler! As you can imagine, sitting in this chair during a hot summer day can get incredibly hot. Cool vests/shirts are available at a rather high cost, so we're going to see if we can build a cool seat cover for him. Stay tuned for updates on this project. Emmett's own set of wheels, his power chair, has been causing some problems. It has been in and out of the shop for repairs and technicians have been out to both Canuck Place Abbotsford and Emmett's house as they try to solve the issues. They are getting closer, but the bottom line is that this second (or third) hand chair has been well used  over the years and it is either going to need a complete rebuild or Emmett is going to need a brand new chair. There is funding available for a basic setup, but Emmett is going to need so much more. For example, Emmett still requires a parental joystick at the back of the chair for things like crossing busy streets. That's optional. Being able to change the seat height from a child sized table to an adult table, that's optional. Yet these optional items are really mandatory for Emmett to participate fully in daily activities. That is so crucial as we all want Emmett to be involved in life.

There are so many people and organizations that are involved in supporting Emmett and we so appreciate them. Emmett is still part of Biogen's drug study on Spinraza and we cannot thank Biogen enough as he has been receiving this medication for 3.5 years now. This drug is truly an amazing and miraculous drug and slowly Canadian provinces are making it accessible. It is exciting to see that another even more innovative drug has just been approved in the US for treating SMA.

 

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