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.
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