Daily/Weekly Thoughts

May 2019

Emmett's Corner

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!

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Book Review!

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!

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