Daily/Weekly Thoughts
Daily/Weekly Thoughts

October 2016

19 Months Old!

October 10th is the day that Canadians celebrate Thanksgiving. This is the day after Emmett turns 19 months old. It is a day that the Willms and Ewald families are certainly expressing our thanks. Emmett is getting stronger and stronger. Last Tuesday and Wednesday he was in at BC Children's Hospital for a series of check ups and the second session of the second phase/year of the experimental drug trial. While we can only guess that he was getting Nusinersin during the first year as it was a blind study - his development suggests he was. This second year he is absolutely getting Nusinersin. His neurologist, Dr. Selby, looked at all of us and commented that she has never seen a little one with Spinal Muscular Atrophy demonstrate improvement like Emmett has. Our miracle baby on his miracle drug. It is fantastic. Right now Emmett is the only child in the experimental program at BCCH - we are hoping that other little ones soon get the benefit of this drug. Even with this drug, Emmett has to fight and work hard for everything. Just watching him work to throw his blocks on the floor is a challenge that he joyfully tackles. We are so happy that Emmett is a happy and outgoing little boy. 

Here is a video of Emmett from just over a year ago, September 2015.

And video from Emmett today:

Like the giant saucer swing that Emmett is using? You can get one too - and save 20% - visit https://www.swingingmonkeyproducts.com/ and on checkout enter the following in the coupon code: EMMETTSJOURNEY   This swing was amazing to find and it provides Emmett with lots of enjoyment! 

His Pulmonologist, who only sees Emmett a couple of times a year, was visibly impressed when he saw Emmett. He literally stopped in the middle of the examination room and watched Emmett. He stared as Emmett jabbered, squirmed, and moved his limbs about. You see, medical experts know that for a child with a diagnosis of SMA Type 1 and a timespan of a few months between visits, that they will note a significant decline.  Emmett is the only patient currently in this experimental drug study at BC Childrens Hospital and he is stunning the medical world here with his obvious improvements. Emmett, proud to show off, lifted his left elbow more than ten centimetres off of the examination table, snorted like a pig, gave a Tarzan yell, and then pretended to blow out candles! 

So we are thankful - even though if we are honest being thankful is so very challenging. Heading to this visit meant packing up his formula, his food pump plus tubing, the bi-pap machine, the oximeter, his suction machine, his stroller plus his wheelchair. I'm sure that I forgot a few things. We are absolutely thankful - but still have those days when we wonder why! Why Spinal Muscular Atrophy, Type 1! Why Emmett!

And it wasn't only these two specialists - the other doctors, the residents, the nurses, the program staff - everyone in contact with Emmett literally have huge smiles as they see this little fighter. So this Thanksgiving we are thankful that Emmett is with us and that he continues to grow and strengthen. His favourite activity right now is taking everything that is near him on his tray/bed/etc. and tossing it on the floor. He loves to hear that bang on the floor and, with his great sense of humour, loves to give the sign for 'more' to make whomever is nearby pick up all of his toys/blocks/etc. up just so that he can instantly toss them on the floor again. He literally never tires of this game. Alisha and Josh, however, are wishing (sometimes) that they'd never shown him the sign for more!

Of course, it is time for another helium balloon as they always coincide with a hospital visit but especially his month birthday. Helium balloons in all shapes and sizes have been presents for Emmett over these past 19 months. Some normal sized ones and some have been rather large. None of them, however, prepared Emmett for his Nemo the Clownfish air swimmer. This balloon filled up the entire backseat of our mid-sized car and while Emmett's eyes bugged out when it first came through the door of his house, once he saw how gigantic it was up close he absolutely played shy. There was no way he wanted that fish close to him. At the same time, he wanted to be able to see part of it. It is going to be a case of want overcoming fear! So here's a video of Nemo without Emmett - we're giving him time to get used to this giant Clownfish! He's allowing his mom and dad to figure out how it works. Of course, they only play work with it to be ready for when Emmett has overcome his hesitation.

As you can appreciate, it was a huge day when Emmett went to Lamp Post Hair Studio and Kim gave Emmett his very first haircut. He is such a fine looking young man ... and his curls are still there ... just shorter. At 82 centimetres tall, with his new haircut, and vertical in his standing frame - what can we say except that Emmett looks like a grown-up almost two year old! You may recall how Emmett had a special harness and helmet set-up to allow him to use his Jolly Jumper. This held up his upper body and specifically his head. Look at the photo of Emmett in his standing frame. Yes, it has harnesses but they are there to hold him into place. And it has a neck/head support to allow him to rest/stop his head from falling backwards. Emmett is, however, holding his own head up as he turns from side to side and looks up and down. Wow! We are thankful for that huge sign of improvement.

While out and about Emmett has surprised many observers who just assumed that dad or mom was controlling his power chair. The reaction is priceless when they realize that Emmett himself is at the controls. Obviously, there are many times when it is an adult providing the inputs but even more when it is Emmett. Bumping into things still happens however he is getting better and better at understanding what he can and cannot do with his chair.

Obviously we are incredibly thankful for all of the prayers and support that are offered from around the world. Just as obvious is that Emmett is still incredibly medically fragile. As we move into cold and flu season this is a stressful time for Alisha and Josh, as for Emmett a simple cold will have such a huge impact upon his weak respiratory system that is already working so hard.

The challenge of letting your little one explore and be a part of the everyday world BUT the urgent need to keep him safe from commonplace, normal childhood illnesses. A battle that Emmett makes more challenging because he wants to be out and about to interact with others. He is, quite seriously, a social butterfly. In fact, while in Vancouver he enjoyed a night time trip up and down part of Davie Street where he could absorb the noise, lights, and smells. Before you get worried - he was back inside before 8 P.M.

It is a challenge to be thankful. Yet it only takes a smile, a cuddle or a giggle from Emmett to push aside all challenges and cause us to see how blessed all of us are.

Emmett - you truly are an adorable little boy who lights up the room with your smile and interactions.

Alisha and Josh - you are amazing parents and your care and devotion for Emmett are a joy to see. That you fight for him every day is not something that you let many others see, but we know you do. Thank you.

The final instalment of our birthday blog is a lengthy video of Emmett using his power chair at Camp Squeah - just outside of Hope, B.C.

 

Comments

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Guest Comment 1 year ago
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Happy Thanksgiving Emmett! Uncle Josh and I wish we could be there. It is incredible seeing you driving, moving, and having fun! You look so handsome :)
Guest Comment 1 year ago
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Way to go, Emmett! We are cheering for you! Love the Gilhuly family
Guest Comment 1 year ago
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Hi Alisha, Josh, Emmett and family! My name is Nicole and I'm the mom of a beautiful baby boy, Cohen, diagnosed with SMA type 1 about 3 weeks ago. I would love to chat if you're willing. My email is nicole.kutchyera@dal.ca. It's wonderful to see Emmett doing so well!:) Nicole K.