Week 49 ~ December 2-8, 2016

Kim and I were excited to check out the 37th Annual London Christmas Craft Festival. It was our first time to visit and it was neat to see items from over 225 Artisans from all over Ontario and Quebec.

This weekend started with a visit to the Dutch Market, hanging with my family and attending our first Christmas party for the season...Big Koomans Family Party. At the Dutch Market, we saw Sinterklaas and Zwarte Piet and since the kids were good, they got some candy bags.

I loved listening to Alex and Hope playing with Dad. Glad they had a chance to play together.

Some wild and exciting Dutch Blitz games took place and a disagreement on how to stack the cards...upon looking up the rules, it was still unclear. Hmmmm.

I love the big Koomans Christmas Party because we get to hang out with many relatives that we don't see regularly. Aunts, uncles, cousins, lots of family...we all get together for some games, a potluck supper, a gift exchange, lots of sports and catching up.

Thanks to Ava and Jaelyn for leaving stuffies for me to cuddle with while our family slept overnight at their house...I never have to bring a stuffed animal with me anymore 😉

We had a visitor at my Mom and Dad's house Sunday night on the back porch...this big raccoon looking for some food.

So I came across this picture this week and thought that I will be brave and show a little of the mess that we lived in the day that I saw this picture on Facebook. 😮 Often I post the good stuff and leave out the negative stuff of our lives since this is a blog for me to remember the good times and not to broadcast issues within our family.

Mark went out to his vehicle one morning and found these amazing patterns of ice on his car. Stunning artwork!

Mark had a whirlwind one day trip to Charlotte for a meeting and that means a late night working on a puzzle...got this beautiful panoramic finished though.

Lots of things going on in our life as December began...the pain level lately for me has been pretty bad and so I'm trying a new chiropractor in hopes of finding some relief from my fibromyalgia.

Last but not least, an update on Logan, just shy of a week after his first injection 😊

Logan got his haircut today! ....significance of this picture is not his uneven haircut but rather that, for the first time ever, he was able to sit in his bumbo (completely independently, without tipping or losing head control a single time) for the entire haircut!

About a year ago he was still able to sit in his bumbo, but would quickly tire, need regular readjustments and his head would tip constantly - with everything together his time in the bumbo never lasted long as it wasn't comfortable and just wasn't possible. But, 6 days after getting his first dose of nusinersen, we have seen many gains which he (and the rest of us) is very proud of! 

           And here is Logan showing off some of his new skills...So proud of him and his
           "never give up" spirit ❤️

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Here are a couple of videos of Logan's new strength (and brief explanation of each as none of it looks like a 'big deal' unless you know Logan or someone with SMA type 1)

Logan had minimal lower body movement - as a young baby he was able to move his legs but he lost it very early and we can't remember the last time he was able to move both legs at the same time. He is now able to lift both legs and hold them up (when he wants) or raise and lower them 😊

Logan has never (that we remember) been able to independently stretch his legs out straight, ever since he started talking, we often hear 'fix my legs!' but over the past week he has shown so much more strength and when laying down, can stretch them out or move them side to side - it's slow but a start and it's getting quicker as he does it more!

Logan had 'normal' head control as a baby, but over the past 2 years, he has slowly lost most of it. Most people who know Logan 'in real life' are used to his head 'tipping' frequently. When in his stroller or driving his wheelchair, he needs to be reclined a bit and still any little bump often makes his head fall forward onto his tray and he needs someone to help him lift it back up; his head was either straight up or on his tray or lap, he had no strength to stop the fall or lift his head from part way and straighten it himself. But earlier this week, he surprised himself and us by lifting his head from his lap! And when asked to do it again, he slowly, and in a very controlled way, lowered his head back down and back up! I think this by far is his favourite 'new' skill and he is eager to show it off anytime - I have no doubt it is much more comfortable when you don't have to depend on someone else to straighten your head for you!

Logan loves to be in the middle of any and all chaos so naturally loves 'colouring' with Andrew & Olivia. Due to the fact that he has no strength, he has never been able to colour independently or even hold a marker or crayon upright by himself as they are just too heavy to hold up and move - this is easy enough to work around and we normally hold the marker up and he can just push it where he wants to colour. Yesterday, for the first time ever, while colouring he was able to hold a marker and colour all by himself!

For the first time that we can remember (I'm sure he did it as a baby but we can't remember the last time he's done it), Logan is also able to lift his elbows up off a surface to either reach for something, give 5/fist bump or wave (no video since I forgot but a big milestone!)

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I love when I get pictures of Logan and Oma cuddling...Logan loves hanging out with Oma and the she loves it too. Thanks Kim for the picture!