Daily/Weekly Thoughts
Daily/Weekly Thoughts

July 2016

Learning How To Move

Exploring!

Bumps and Bruises are part of growing up and learning to move. In Emmett's case, the bumps and bruises are hopefully mainly on the objects around him as he is exploring with his electric wheelchair. As soon as he is set in his chair seat he starts going for the joystick. We quickly learned that it must be positioned out of his reach until he is fully strapped in with his five point harness and that the gear selector has been positioned at very slow. Or maybe one level up at slow. We aren't ready for him to explore his environment at top speed - which must be about 3 mph. I must warn you up front about these video clips. They are slow. Very slow. Only Emmett fans will be able to sit through the whole thing. (And if you're left wanting more, I have a couple of hours of video that I can show you. Just come on over!)

Slow. Yet at the same time it is so exciting to see that after just one week Emmett is doing quite well in his chair. Most of all, he loves it and his face lights up when he is asked if he wants to go in his chair. Once in his chair, he is quite focused and working hard so you won't see the same expressions that we do. His grip on the joystick changes from moment to moment. Sometimes it is one finger on the top - either the index or middle finger - and other times it is a firm grip with his whole hand. Or some combination. Once in a while he will stop and give his hand a rest by twirling it about - just like race car drivers reduce tension by twiddling their fingers on straightaways. Sometimes you'll see his steering hand trembling - because he's working so hard. 

Emmett is a pro at doing circles but there are highlight moments when he is able to head straight on to a target place. Or when you see him alter direction to get to where he wants. Even more, he runs right into garden plants, trees, automobiles, houses, and fences. Obviously, adult supervision is required.

Enjoy the video. In the first one the camera is mounted low on the chair. In the second it's mounted in several places - behind his right shoulder, left shoulder, on his thigh looking back, arm looking back, belly harness looking up. This is our driving Emmett.

In just a few days Emmett is going to be the ring bearer in the wedding of his Aunt Katie and his future Uncle Josh. Hope he doesn't lose the ring! Stay tuned for more of this handsome young man!

 

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Guest Comment 1 year ago
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Absolutely love the videos and all the different views. I loved seeing his face while he explores. Keep going Emmett,!! Dar Gooch and Family
Guest Comment 1 year ago
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Amazing! Praying for you all. Dave
Guest Comment 1 year ago
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Brilliant! Video of Emmett as ring bearer... please? :) - Richard W

Emmett's On The Move!

Emmett Is On The Move!

As you know, Emmett is 16 now (months, not years) so it was only natural that Emmett gets his own set of wheels! Believe it or not, it wasn't just Josh pushing for Emmett to get behind the controls. It was Alisha too! In fact, it was all of us! Everyone surrounding and supporting Emmett. You will remember that he had an innovative little electric 'cart' that allowed him to move about. While it was a curiosity, in practice it didn't work effectively. Rather than a joystick it had four buttons and that was simply too complex for this little guy (even younger at that point). But more challenging was that the wheels were only friction fit to the drive axles meaning that any incline or complex terrain (like carpet) and the axles would slip while the wheels stood still. (Yes, I could have fixed it BUT I was under strict instructions from the occupational therapist not to modify it. Or future equipment loans could be affected.)

Then you saw the photo of it a while ago where Emmett got to try the power chair out. That was the start of Emmett's involvement in a mobility study. We are so pleased with the support that Emmett is receiving through British Columbia Medical Services Plan. His medical team has been doing so much for this little boy. Today's focus is going to be upon his Occupational Therapists. Emmett has three. In BCCH Emmett met his first OT who has stayed involved throughout - mainly during visits to BCCH. His local OT is here and supports him actively with home visits and comes up with ingenious devices to encourage Emmett to move and get vertical. She got Emmett involved with the OT who's working with kids from a wide geographic area in this mobility study - who then saw that Emmett had great potential for effectively using a chair. The result, he was accepted as a candidate for this mobility study and at 16 months Emmett is the youngest person in B.C. that we know about with a power chair. And Oh My Goodness - Emmett Loves It!

Now it wasn't all peaches and cream. Either Emmett remembered that he got to sit in this chair (actually, a similar one) and didn't get to keep it (quite a sad day) OR he simply didn't like the two or three hours that he had to stay awake and miss his nap time while the technician was fitting him and his chair into/onto the power chair with wrenches, drills, and other power tools. Yes, the same technician who worked on his previous equipment and has done such a great job with the custom work to make Emmett's adaptive equipment comfortable for him. In fact, it is one of these chairs that is actually fitted to the power chair. Emmett was quite cranky with all of this sitting and strange mechanical noises going on behind him. Even worse, when the joystick was active Emmett did a 180° turn and found himself nose to nose with the technician. He was so startled that he started a 30 minute crying session. Alisha and Josh had to get him out of the chair and let him have some quiet time in his own space.

When he was settled down and ready for some more seat time, his power chair was ready for him. Look at the pic to the right where he's fussy. Even there you will see his right hand on the joy stick. This little boy was ready to move. He is alternating between using one finger on the joystick to having his palm on it. Just as exciting but easily overlooked, Emmett has been holding his wrists straight on his own. That probably makes it even easier for him to control his new chair.

Like most novice drivers, Emmett's experiences behind the controls have not been flawless. In fact, he's going to make his mark on the world. Or at least, on Alisha and Josh's house. If you've followed Emmett's Journey then you know that one of his favourite games is dropping things on the floor. Not only does he enjoy the activity and having someone pick the items up for him, but he loves the sound of the item hitting the floor. If it's one of his helium balloons then it's the sight and sound of this hitting the ceiling. Unfortunately, his Seasame Street balloon was released while he was out on the back porch. While it hit the ceiling the wind current also caught it and Emmett watched it sail away (start humming the soundtrack to the song 'Sail' here). Back on topic, he has quickly transferred that love of banging to his wheels - and giggles when he crashes into the wall ... then does it again! Josh is absolutely hoping to quickly teach Emmett that this is not acceptable! Of course, it is very hard not to laugh as he is exploring his surroundings and banging into things. Simple things, like being able to touch something that he wasn't able to get to previously. Turning around ... and around ... and around. No question, doing circles is the easiest thing for Emmett to accomplish. He is, however, seeming to understand how to use the joystick to make the power wheelchair go where he wants to. Remember, this 16 month old has only had this for two days. We're pretty impressed with what he's able to do.

This is so exciting but also has brought a huge number of challenges. Alisha and Josh have temporary ramps to get this wheelchair in and out of the house. They can also use them to get the wheelchair into a van or truck. It may be small but it is quite heavy so physically lifting it is not recommended. Funding is available to obtain a permanent ramp to their house. Upgrading their compact car to something like a van is going to require some help. Stay tuned for further information about a van fundraising initiative to help this young family out. They're trying to figure out what is best - a full mobility van now or just a larger vehicle for now that can handle all of the equipment Emmett needs when he leaves the house. There are so many unanticipated expenses with a medically fragile toddler. The exciting thing - Emmett is a toddler now. Our baby is growing up and we will do everything we can for this little man.

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Guest Comment 1 year ago
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This was wonderful to read - on so many levels. That the Medical Services Plan has been so helpful, that the OT's and technicians have been both skilled and very personable, that the difficult to use electric cart was replaced by this astounding chair, and best of all, that Emmett can control it and even make it clear that he finds delight in the wall bumping, Hopefully you can find a suitable spot for the banging without denting! May this summer be a very happy time for you all! Bob and Luella Meighen
Guest Comment 1 year ago
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Wow! maybe Emmett will be a race car driver like his Grampa. So Cool. Love Aunt Barb Uncle Rob
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This sure put a big smile on my face. The joy in Emmett's face is tangible!An Ontario friend, Maureen
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Emmett is going to get the shift stick down pat! Look out Grandpa Ewald, before you know it, he will be taking over your race car! So Happy for you! Praising the Lord for these blessings! Love
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Such uplifting comments on your families journey. Such smiles. Will follow this journey wishing all your family prayers and love. Mrs. Valerie Hertel

16 Months Old!

Saturday, July 9th and Emmett is 16 months old. Thank you for all of your prayers and warm wishes over the journey that Emmett has been on. While the diagnosis of Spinal Muscular Atrophy, Type 1 did not occur until late August, it was around this time last year that family concerns about Emmett's lack of movement began. We were all researching the floppy baby syndrome - but our medical professionals perspective was that all babies develop at a different pace with Emmett just needing more time. Fast forward twelve months and there are probably even more questions. But there are some answers. More important, there has been so much joy (mixed with huge doses of anguish) as we share moments with Emmett. Last weekend you saw in our blog how our hearts missed several beats as he was taken to BCCH in the middle of the night where he was admitted to the PICU. He has quickly beaten the cold that he came down with last weekend. As he had a build up in his lungs it was close to pneumonia, but now just a week later that is all behind us and we are looking ahead to the next adventure. And there will be some challenges too - we're all to sure of that.

Pushing personal limits. That is the challenge for Emmett. This unusual system is a way to get vertical and have his feet planted. That is the challenge and push for Emmett. So much of his time is spent seated and reclining or lying down. Even when he goes for car rides it is in a specially designed car bed that takes up most of the back seat of their car. 

This setup was customized for Emmett and, especially when a drill had to be used to finalize the fitment, he was not too thrilled with that. He was quite happy to have the attention and enjoyed being upright. Obviously, his cold put a temporary stop to being upright but as that's now gone he'll be going vertical again. We really cannot say enough positive things about the support that he is getting through his team of occupational and physiotherapists.

Bottle lids continue to be one of Emmett's favourite games. Picking them up and dropping them onto the floor is not as easy as it sounds. The blue mat has a light adhesive on it so they don't slide off. Emmett really has to work to reach them and then to pick them up. Of course, dropping them onto and hearing the bang on the wood floor always brings a smile to Emmett's face. If they land on his tummy without hitting the floor, that causes a look of consternation. Clearing the table of all of them causes giggles as then mom or dad need to pick them all up again. 

What is next? Well, a few posts ago you saw Emmett trying out a toddler sized electric wheelchair. That is on it's way to Emmett and can you imagine him roaming the house and neighbourhood. It certainly won't be on his own! I'm curious to see if he will take after Josh and be a fast moving toddler or if he will take after Alisha and stop every second step (do you call it a step if you're in a wheelchair?) to examine his surroundings. Emmett loves the outdoors. Especially the trees and watching the sunlight filter through the leaves. So his backyard is a perfect haven for him as it is full of trees, plants, and flowers. While he loved the hanging out in the single hammock he always had to be with someone (great cuddle time) but now with his giant green saucer swing - right beside the hammock swing hanging from great apple tree branches - Emmett has a perfect play spot.

Pictures not big enough? Don't forget, click on them to get a larger view.

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We are so thankful to read of Emmett's recovery. The photos in the garden are so sweet. May you enjoy summer days with your sweet boy!
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That's fabulous that Emmett can get around on his own! Thinking about you all. Ian

More Balloons & Home Today!

Emmett just got a new balloon from his cousins, Kole and Khloe, that has a big smily face on it. Plus at the BCCH Gift Shop they had a Sesame Street balloon that I simply couldn't pass up. Obviously, Emmett really enjoys this BUT the big news is that he is on the upswing and quickly becoming himself again. Emmett has a rhinovirus. Sounds like an ominous illness that you've never heard of before, but it's commonly referred to as a cold - which you have heard of and have likely had without thinking twice. Before it sounds like I'm passing it off lightly, a cold for a youngster with Spinal Muscular Atrophy, Type 1 can have terrible consequences. Emmett will stay in the PICU at BC Children's Hospital for another day or two while they ensure that his lungs are cleared out. And it is because we often don't think twice about having a cold that Alisha and Josh are so protective of Emmett and keep him away from crowds and mandate that everyone who enters their home washes their hands and use hand sanitizer. No colds allowed.

While we were there yesterday (taking much needed fresh clothing and shower supplies), Emmett got chest physio and deep suctioning (that made me cringe but Emmett handled it like a pro) to assist his breathing. He was actually off of his BiPap machine for almost two hours. BiPap is Biphasic Positive Airway Pressure and this is a machine which provides a pressure controlled ventilation. It's more advanced than the CPap machine that you may have seen someone use for sleep apnea. On a normal day Emmett only uses his BiPap while he's sleeping at night or napping during the day. Since he got this cold, he has been on it much more. In fact, for 22 of yesterday's 24 hours. The medical staff is pleased with how Emmett is responding.

 

Upon arrival at the hospital he got an IV to get some extra fluids and drugs quickly. That's not needed right now but is still there 'just in case'. His little foot looks so cute!

Emmett, we love you and are praying for you. We look forward to having you home soon. Your 16 month birthday will be happening in just a few days! You need to spend it playing on your swing!

Alisha just sent an update that Emmett is doing even better today (Tuesday) and will be coming home on Wednesday! Way to go, Emmett.

Second Update: Emmett is coming home today - Tuesday!

 

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