Daily/Weekly Thoughts

September 2019

Time Flies!

Can you believe how swiftly summer has flown past! It's now autumn! In fact, on the rare day that it isn't raining or foggy here in the Fraser Valley, the distant mountains - which were almost bare - are now wonderfully covered with snow. The temperatures are falling. So many changes! Plus so much activity! Aunt Katie from Australia came to visit and smothered Emmett with kisses! Emmett was off to Camp Squeah near Hope for a Church family camp. He's been out to the pumpkin patch where he selected a pumpkin - that he announced would have a Hippo carved into it. Just like last year. And just like last year, and the year before that, he proclaimed that he would be Woody the Cowboy for Hallowe'en. Of course, that meant a desperate search of local thrift shops and stores to find a costume that would fit. As this little boy has outgrown all of the Woody the Cowboy costumes that he owns. And that is a few. Perhaps we'll have a Woody the Cowboy pumpkin too! Emmett was out at the Chilliwack Corn Maze where it was pouring rain. As a result, he wasn't out in the maze itself. His power chair would have been so bogged down in the mud that it would have never gotten clean. He did, however, dress up as a Giraffe for this outing. This creature of habit is willing to change things up. In fact, he's already agreed that next spring the family camping trip should be somewhere other than Alice Lake Provincial Park!

Time flying by also means that it has been almost four months since his last lumbar puncture and dose of Spinraza. His next one, which will be number 16, will be on October 30 at BC Children's Hospital. And yes, Emmett is still planning on dressing up and heading out trick or treating on Hallowe'en. He wants to get some more shakers! Shakers, if you're wondering, are Smarties. You may have forgotten that Emmett doesn't eat anything by mouth, so Hallowe'en treats all get passed on to grandpa (if I'm lucky). Except for Smarties, which make a wonderful noise when shaken thus Emmett knows them as shakers! Of course, this is where we can let you know of a tiny step for all of us but a huge leap for Emmett. He is experimenting with swallowing just a millilitre or two of water. So on the 30th please remember Emmett. While playing with his dolls one of them recently went to the hospital for spinal muscular atrophy. Then Emmett gave his doll a dose of Spinraza. That hurt. Emmett knows this and, knowing that this is just a week away for himself, really isn't looking forward to this hospital trip.

As Emmett matures and grows, he is getting stronger and stronger plus bigger and bigger. And heavier and heavier. As a result some modifications are required. He has a lift now in his bedroom that his parents can use to transfer him from bed to wheelchair and whatever is necessary. This will soon be added to their main living room, where it will be easily accessed for most daily activities. As all of you who follow along on FaceBook know, there are plans to modify their bathroom to make it much more accessible. In fact, on FaceBook we had a somewhat spontaneous fundraiser and with your generosity over $5,000 was raised in one week for this very important project. As you can imagine, this is a huge financial gift that will cover about a third of the anticipated cost of this renovation project. Utilizing the existing space plans have been drafted that provide for a roll-in shower, maintaining the tub (used for light physio and water play), and obviously an accessible sink and toilet. Hopefully January is going to be the bathroom renovation month.

Emmett has another great new piece of adaptive equipment. A walker. This unit has a bicycle style seat that supports his weight while allowing his feet to touch the floor and his hands can power the wheels. So far it is more comfortable than a loaner one that he had tried out, but it's certainly not his favourite device. We also got a light switch extender - a unit printed off on a 3 D printer - that Emmett can grasp when he is in his wheel chair. He doesn't have the strength to use it yet, but it's another goal to have and an opportunity that, without this extender, would have been well beyond reach. There are so many things that are simply overlooked by able bodies - yet are a huge obstacle for those with physical challenges.

On October 22nd individuals and families affected by Spinal Muscular Atrophy marched in Victoria at the parliament buildings. BC was an early adopter of Spinraza for individuals with SMA Type 1 but has still not approved this incredible drug for patients with Type 2 and Type 3. As Spinal Muscular Atrophy is a progressive disease, these individuals will really benefit from this drug that will stop and possible reverse the disease. Emmett has Type 1 but with this drug has improved to where he now presents as an individual with Type 2. The changes that this drug has on individuals is incredibly positive. Emmett meets all of the criteria that BC has for accessing Spinraza but this drug should be available to everyone.

According to Emmett, I am "Silly Grandpa"! No amount of coaxing and suggestions like Super Grandpa or Awesome Grandpa have caused him to deviate from this moniker. This little boy is stubborn - thus "Silly Grandpa" it is. Some could suggest that it is elder abuse! Teasing that borders on bullying! I, however, think that is it awesome. Fair play for a little boy who in the past I've called 'Super Diaper Head Baby' (don't believe me, there are a few blog posts that even feature S.D.H.B. and I'm pretty sure that I've promised that there would be one more! Emmett!) and tease on a regular basis. Together we push the boundaries. We do stuff like swing higher on the swing than his mom believes is appropriate. Silly Grandpa. Go outside together and put him down on the grass (which he hates touching) so that we can look at the clouds together. Silly Grandpa. I let go of the three wheel bicycle handle while going down hill so that Emmett experiences freedom plus the exhilaration of knowing that Grandpa is running beside him so he is on his own and his grandma and mom are shouting in the background that I should stop immediately! Silly Grandpa!

Silly Grandpa is the truth. Emmett and I have a history of doing silly things. I pick him up off of the floor and bump his head on the ceiling! Or the door frame or wall as I'm carrying him around. ** IMPORTANT NOTE: very GENTLE bumps.** I roll him over on his gym mat and push him onto the floor. I carry him outside and we roll down the hill together. We make giant splashes in the bathtub and get water everywhere! I've bounced large, inflatable balls off of his head and face. We have gone up and down steep hills on his power chair. We've gone through culverts (big ones in parks!) together. We splash in puddles! Yes, I'm Silly Grandpa. Because, like everyone else who surrounds him, there is nothing better than hearing Emmett laugh. That is the best sound in the world.

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