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.
Oh boy! There's nothing quite as hilarious as getting on Emmett's bad side. While this little one is a very cheerful little boy most of the time, he does have his moments! Maybe you didn't read a story ... or you couldn't understand what he wanted ... or he just woke up in a grumpy mood! Whatever it was, it is a momentary reminder of another aspect of this little guy's very expressive personality.
Daily workouts and physio sessions with mom are a key component of daily life. Tummy time is something that has always been a frustration point for Emmett. Bowling is much more his style - and gives whoever he is playing with an extensive workout.
Emmett's uncle Ben (affectionately called 'Ubba' got married recently to Alesha. Emmett was one of two ring bearers and he did a fantastic job. Congratulations to Ben and Alesha!
Unfortunately Emmett picked up a bug over that happy and exciting time. This meant a lot of time on bi-pap and resting, but it was also a bug that Emmett was able to fight at home without a trip to BC Children's Hospital. He was under the weather for over a week yet his personality was back and he was feeling a bit better after about three days.
There's a new addition to Emmett's menagerie of animals - please welcome Ted E. Bear to the family. Ted E. Bear was made by volunteers at an organization called Tubie Friends. Tubie Friends aim is to help children with a feeding tube - and Emmett certainly has an instant connection with Ted E. Bear. What's fantastic is that Ted E. Bear's feeding tube port is orange! Further helping Emmett feel at home with himself is that Cliff now sports a fantastic pair of AFO's. I put on a call of FaceBook for help from someone with a 3D printer and a huge thanks to Dylan who designed and got Cliff's AFO's printed!
Spring has led to finding beautiful flowers and some wonderful hikes. The suspension bridge at Cascade Falls is a short and very steep hike to an awesome view. Please note, it is not wheelchair accessible.
Playing cards is a new activity for Emmett. Playing RV, Toy Story, Cars, and on and on are still a huge part of Emmett's daily activities.
Keeping Emmett occupied is easy as he always loves and wants to be doing things. The bigger question is whether or not you can handle playing Winnie the Pooh and the Hundred Acre Wood or RV and a family trip for as long as Emmett wants to!
You may recall that in the past Emmett hated getting his hands dirty. In fact, when playing with his mini-sandbox he wouldn't touch the sand but only use his small plastic implements to move things around. Well, here is photo proof that Emmett is getting his hands dirty! Hurray! Emmett also got to sit in his grandpa's race car and this was a first. Not because grandpa hasn't let him sit in it before, but even though Emmett loves looking at the race car and talking about it, up until now he has declined every invitation to sit in it.
Emmett is still very much in an Elephant and Piggy phase of his books right now. Here's another story that Emmett would like to share. He's wearing his bi-pap which impedes his enunciation a bit, but we hope you enjoy another moment of reading at Emmett's Corner!
Emmett loves books, stories, and expressing himself. He loves telling jokes and stories - and as he gets older his stories are getting more and more sophisticated. (Remember, I'm a grandpa so there's a slight chance that I'm biased!) Just the other night his mom asked a question about the location of one of their friends and Emmett piped up that he knew. Then he went on to tell us that this person was on a boat trip and they were going for a long time but then the boat sank, in very deep water, and that this individual then had to swim to California! Oh my goodness, he was funny. Very serious and straight faced as he told us this fantastic yarn. Perhaps his fascination with ships comes from his recent appreciation of the book Elephant and Piggy Go For A Drive. Do not let the title mislead you, but rather than me telling you about the story I'm going to let you join Emmett as he reads/tells this story to you. His obvious enjoyment of the story indicates that he's giving this book two thumbs up. (Please excuse the very poor video work - but I needed more hands! There will be better video soon.)
What is incredible is that when Emmett's journey started, his specialists couldn't say if he would be able to speak or not. Obviously, SMA affects the muscles that are involved in speech. The progress that this little boy is making is so wonderful; the joy that he is sharing is contagious. Emmett has had a wonderfully healthy winter and that is such a blessing. This past week he has had a touch of the stomach flu which obviously put everyone on edge. He's spent a lot of time on his bi-pap and, while he still requires close monitoring and a lot of suction, he's doing much better. With no trip to the hospital.
Emmett is proud to announce that he has a new aunt. This was a massive event and Emmett was one of the ring bearers in the wedding of his Uncle Ben to his new Aunt Alesha. There are no pictures yet as the bride and groom have not released them. That will happen soon though! We are very proud of Emmett's work and he overcame a few road blocks. First and foremost, his electric wheelchair malfunctioned exactly one week before the wedding (on a Friday night, of course) and the technician was sick so couldn't come and work on it (remember, no sick people near this little boy). As a result, Emmett had to go to the rehearsal in his manual chair and there was absolutely no time for even a practice run - as the chair got fixed just 24 hours before the wedding. Bottom line, he did fantastic. Congratulations to Ben and Alesha!
Emmett has been getting his speed fix too. Whether it has been on his bicycle (hmmm, it has three wheels so should it be called a tricycle!), his manual chair, or his power chair - even riding in his van - Emmett loves the sensation of going fast.
There will be a lot more photography added in a day or two!
Happy 4th Birthday, Emmett!
A few weeks ago we started talking to Emmett about how his birthday was going to be happening soon. Emmett was quite concerned about this, as he had already had a birthday party. Emmett has very clear memories of his third birthday where he got to ride around the block in a city bus! Emmett wasn’t quite sure why he would need another!! It took a while to convince Emmett that he actually gets more than one birthday party - one every year in fact. Fortunately by the time his actual birthday came around last Saturday, Emmett was more than certain that he wanted another party - and more presents!
Many of you know that Emmett’s Birthday is a really huge deal in our family. When Emmett was 5 months old a neurologist told us that Emmett likely wouldn’t even live to see his first birthday. The doctor told us that Emmett would never hold up his head, sit up, walk, or talk, and that he would continue to lose his ability to move, to breath and even to smile. During the two months leading up to Emmett’s diagnoses we had recognized that something was not quite right in Emmett’s little body - but could never have imagined that it would be as terrible as SMA Type 1…
For us, Emmett’s birthday isn’t just a special day, it's a reminder. A reminder that miracles do happen, a reminder of the joy and the love that is in our family because of Emmett. This is why we go all out for Emmett’s birthday, convincing the Abbotsford Fire Department to bring a fire truck and fire fighters to make a little boy happy. This is why we spend hours baking and decorating the coolest firetruck birthday cake - even though Emmett can’t actually eat it. This is why Emmett’s birthday is the most special day of the year to us…. We were never supposed to experience it. Every birthday Emmett has gives us hope for the next one, and the next one, and the next one. Here’s to many more special days with you, our wonder boy!
We love you Emmett,
Josh & Alisha
Check back frequently throughout this week as more photographs will be added.
Huge Thanks to Engine #6 from Abbotsford Fire Station #1 that came out to celebrate with Emmett. It was awesome, unfortunately, they had to respond to a call so they didn't get any birthday cake. As Emmett lacks lung power, he blew out the candles by waving paper plates!