Daily/Weekly Thoughts

January 2016

We're All On A Journey!

I have been hearing some voices of concern about the lack of posts here on Emmett's Journey. Please know that Emmett is doing fine. In fact, now that he is ten months old, his two bottom teeth have decided to make their appearance. Whoa, stop the presses. Just got a text that a third bottom tooth has just appeared! Apart from one quite irritable night and tons of drool, Emmett handled it easily. Which is a good thing because his two top teeth are apparently right below the gum line and ready to break free any day. I am so impressed that Alisha has put Emmett in his Jolly Jumper rigging and allowed him to play in it. The bathtub is still one of Emmett's most active places. As much as the public swimming pool is an exciting place, his activity tends to be limited as his focus is upon the sights, sounds, and activity all around him. It is in the security of his calm and quiet bathtub where he twists and turns, moves all of his limbs, and even more startling, arches his back and neck as hard as he can. This, of course, means that if he is in his special neck flotation ring, that it will pop up and essentially go vertical. It keeps Emmett's head well above water but has caused minor heart failure for Alisha, Josh, and Rhonda as they've been giving him baths and allowing him to play in the water! I think it's actually pretty cool. I mean, everyone now has to be more cautious about Emmett's placement, because he's active. Due to his lack of movement up to now, if he was set on a couch or a table or a counter or virtually anywhere, we didn't have to worry. Emmett didn't move. Before. And honestly, he still isn't moving a lot compared to other ten month old little ones - but his increasing activity means that everyone has to be more aware. Obviously, everyone has always been aware of his need for health safety. If you know anything about his mom and dad, grandparents, aunts and uncles - it's an obsession. And now we're branching out with safety!

Some of you picked up on my earlier comment where I said Emmett's top two teeth are apparently right below the gum line. Pam and I are back in Ontario right now. We have been going non-stop. Late in 2015 we decided that we had to be closer to Emmett, Alisha, and Joshua; but that living in our RV in their driveway or  right in their house (once it got freezing cold in the temperate Fraser Valley) was simply too close. We bought a strata (that's a B.C. term, we Easterner's would call it a condo), that's a rancher/bungalow style townhouse. Easy access for Emmett to visit and within an easy ten minute drive for us. While finding the right place was a challenge, thanks to Allan Unrau at Landmark Realty, we got it. Then at New Year's we came back to Ontario and found that the real challenge was boxing up 29 years of living. Oh my goodness! The transport company is coming this Wednesday and it has been a rush. With multiple trips to drop things off at a thrift store, several trips in our friend Doris' truck to move larger items around, a few visits from friends who loaded up on car parts from Frank's bizarre collection, and we are 'almost' packed today. Big thanks to Dawn Peace, a Re/Max Twin City realtor here in K-W, for her thoughtfulness and caring throughout the process of listing our home and helping us work through offers and such. It's not black and white yet, but once a few conditions are satisfied that will happen.

So the blog has been somewhat quiet. That will change soon.

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Guest Comment 8 years ago
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glad to see an update and to know that Emmett is doing well. All the best with your move! Keeping you all in our thoughts and Prayers! Greg and Mary
Guest Comment 8 years ago
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Such a sweet boy! God bless you with grace. Helene
Guest Comment 8 years ago
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Thanks for the update. Praying for you all. Beautiful happy boy! From Dave and the team at OSM.

Emmett's Favourite Toys!

Emmett is ten months old today!!!! (January 9, 2016) In honour of this special day, I (Alisha) have decided to write a post about a few of Emmett's most favorite things.  One of the (many) challenges of SMA is that Emmett is a really smart, intelligent baby and he wants to do the things all 'normal' babies do, but his mobility is very limited.  We've had a hard time finding baby toys that can work for Emmett.  For instance, he really loves music, but it is hard/nearly impossible to find a musical baby toy that Emmett is strong enough to press the buttons. Thankfully his Grandma Rhonda found one toy that plays songs and animal sounds just by touch (Emmett is so excited about it that we sometimes can even forget how annoying the sounds are!) On this blog we've already shown you some of his favorite things; his bath ring, his balloons, and his jolly jumper that really allow him to play and explore his environment. 

Even before Emmett got his SMA diagnosis, we realized that his mobility was less than other babies and we started to make changes to his toys.  For instance he really loved to play with toys that dangled off of his baby play mat, but had trouble reaching up to them, so we just added a few extra plastic rings. When he was about 6 months Emmett started losing even more mobility in his arms so we would have to roll up blankets and prop his up arms so he could still swat at the toys.   

Ever since Emmett was 5 month old, feathers have been one of his favorite toys.  They are colourful, light, easy to wave around, and they tickle! He also has some weird mini pool noodles things that his Grandma Pamela found and that fit perfectly into his hand. He enjoys hitting his Dad in the head with them. We were even giving him Kleenex, plastic and tissue paper to play with because of how light and easy it was for him to hold on too, but had to stop that once he gained back the ability to put things in his mouth. (For those who have been following Emmett's Journey, you'll know just how huge a deal it is that he can reach his mouth again!!!!!!!!). Now we also let him play with cheerios so that he can learn to coordinate his thumb and index finger by picking them up.

Recently Emmett’s discovered that the lids to his bottles fit into his little palm perfectly and make some really cool noises when hit on the floor, you can watch the little movie clip to see how much fun Emmett has with them!  We are so happy that we have still been seeing some small improvements in his movement and strength - the other day he rolled his head while he was on tummy time – we haven’t seen him do this since August!  GO EMMETT!!!!!!!!!

Emmett loves flashing lights and whirring, spinning toys. Sounds and touch are awesome. He is a little boy who loves going for stroller and wagon rides. Bedtime is one or two stuff animals and his amazing turtle music light. Happy tenth month birthday, Emmett. We love you and are so proud of you!

 

 

 

 

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Guest Comment 8 years ago
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So proud of our darling boy! xoxox
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I love Emmett's look of concentration holding the mini pool noodles! He's probably trying to think who he can whack next with them. Praying for you and your precious little boy! Happy 10 month Birthday Emmett! Love Great Aunt Janice XO