Daily/Weekly Thoughts
Daily/Weekly Thoughts

That's One Small Kick In Spite Of SMA ...

That's One Small Kick In Spite Of SMA, and One Giant Kick At SMA!

On Friday Alisha called out, "Look at what Emmett's doing!" Believe me when I say that we still drop what we're doing and head to see what this little boy is up to now.

Ever wonder what a corduroy road feels like? Then take a wheel chair for a spin on a wooden pier! Emmett was enjoying some ocean air by heading out onto the pier at White Rock, B.C.

On Friday Alisha called out, "Look at what Emmett's doing!" Believe me when I say that we still drop what we're doing and head to see what this little boy is up to now. For instance, several weeks ago he learned to cross his eyes at will to get a laugh out of others - to all of our friends who are eye specialists believe me when I say I'm discouraging this. And he loves doing circles in his wheel chair or coming right up to you and then stopping. Or going 'ssshhhh' with his finger to indicate being quiet. This wasn't one of those. He was sitting in his power chair and swinging his feet. That's right. SWINGING HIS FEET! He will frequently move his toes. He will slide his foot off of the foot rest. He has swung his feet a little bit. He shows us a lot of leg movement when he is floating in water. But this time he was simply swinging his feet around and enjoying it. Can you imagine how huge this is and how cute it was to see him sitting there kicking and swinging his feet! There simply are not words to describe this moment. Perhaps a video will help. And isn't he cute in his 'jammies'!

Emmett loves toys. He has a lot of them just like every other two year old. Emmett is incredibly fortunate to have gotten a power wheelchair at 16 months of age and, while at first it was cute watching him try to manipulate the joy stick as he really didn't have a clue how to operate it those first few days, it didn't take very long before he was getting to places that he wanted to go. 9 months later and his power chair is in use daily. It is a part of his life and we are, without doubt, so lucky to live in a country and a province that supports the mobility needs of little ones. This chair is a tool that provides this little boy with the ability to interact with others. While the chair is not a toy, there are many toys which help him to expand his horizons and to stretch his physical limitations. Play and interaction with others are a key part of socialization and learning. Toys and games are an integral part of learning. We are looking forward to the end of flu and cold season to allow Emmett greater interaction with others. The ball on the rope is really to indicate stop the car when it touches the windshield - but it is the perfect height for Emmett when he is in his chair. And Emmett has learned how to push the chair's control buttons to change speeds (also to go up and down). He's such a smart little boy and learned this from watching adults (I only gave him one formal lesson).

Of course, then there's Emmett's neck and head control which is continuing to develop. Emmett requires support to sit up, however, the amount of support has reduced significantly. Plus he is able to hold up his head for longer and longer periods of time. What is really cool is watching him while Alisha is supporting him - and he tilts his head back to look at his mommy! Then he physically pulls his head back into an upright position - talk about strength!

Emmett's Journey has made a point of celebrating his birthday every month. Now that he has had his second birthday we are going to continue with the blog and the posts will likely happen on his birthday. However, we are not going to openly celebrate his month birthday. We will be celebrating and sharing special moments and thoughts that arise as we're laughing, playing, and probably even crying (at times) while we watch Emmett on his journey. Of course, there will be blog postings at other times too. Thank you for following with Emmett on this Journey. Thank you for your prayers, your support, your warm wishes, and the love that you have for our little Emmett!

P.S., not sure what a corduroy road is? Your homework is to find out. Ask someone who looks old (but don't tell them they look old) or do a search on Wikipedia. And while Emmett is almost always happy, he does have his moments! But even amidst all of these tears, he's holding his head up on his own!

Comments

  Validation Code
Guest Comment 2 months ago
Site Visitor
+1
Poor Comment Good Comment
That is amazing! He is doing so well, lt warms my heart! He is beautiful!
Guest Comment 2 months ago
Site Visitor
+1
Poor Comment Good Comment
Hooray for Emmett!!! We continue to pray for all of you. Yes I know what a corduroy road is we still have them in Bentinck Twp. Love to all. Aunt Barb

Off To See His 'People'!

Visiting BC Children's Hospital and Canuck Place

Update from Alisha and Josh at 1 P.M. PST Wednesday.

"Long day! Neurologist, blood work, nerve conduction tests, EKG, physio evaluation, and lumbar puncture, all by 12:00! Now time for a nap..."

Emmett is heading to BC Children's Hospital where he will have a variety of appointments and, most important, another lumbar puncture and injection of Spinraza. We are praying and hoping that this goes smoothly for you, Emmett! And you too, Alisha and Josh.

Meanwhile, it's time for a short clip of Emmett doing his favourite things. Playing in the bathtub and driving his chair outside!

Have as much fun as you can at the Children's Hospital and Canuck Place. Enjoy visiting your friends! While we are cringing at the thought of the lumbar puncture, we are optimistic about what the results will be.

Comments

  Validation Code

Happy Second Birthday!

Emmett's SMAzing!

On March 9, 2017 Emmett will be two years old and the celebrations started last weekend. Here in beautiful British Columbia our trip to the Vancouver Zoo was altered due to the temperature hovering around zero with a mix of rain and snow falling. Terrible weather. An outdoor trip was absolutely not a good idea so we did the next best thing ... we went to a pet store! For Emmett this may have been even better. You see, Emmett really hasn't been in a store since he was about five months old so this was an exciting experience! The sensory stimulation entering the store was fantastic. Lights, colours, fish in aquariums, rodents (in cages), amazing little song birds, and ... giant ceiling fans! Plus huge aisles that, once Josh felt Emmett was beginning to pay attention to what was immediately around himself, Emmett got to cruise up and down in his chair. Some aisles more than once but pretty sure that Emmett got to all of them! Like many of our videos, this one is long and rambles about. You'll see Emmett selecting a fish to take home. There's some suctioning. And at the very end you'll see Emmett getting strapped into his car bed. He cannot stay in his chair while being transported.

Upper left - staring at birds flying overhead. Emmett not happy about going back home.

Lower left - wanting to forget the fish and continue driving! At home playing with cars and trucks - while the fish is watching.

Roger and Rhonda captured this video of Emmett raising his hands and arms! Don't you just love how he's watching his hands and arms! How he's literally willing them to go up! He knows! Just like when he was 6 months old and I could tell by the look in his eyes that he knew that his hands and arms used to work but then they stopped. He knew! 

We are winning this fight right now but the battle against Spinal Muscular Atrophy is a lifelong one.

We all love someone who's SMAzing. Aunt Jennie, Uncle Ben, Aunt Katie, and Uncle Josh weren't able to join us for the birthday celebrations but we know they were celebrating with Emmett. Aunt Katie and Uncle Josh were planning on visiting the Melbourne Zoo on the same day we were at the Vancouver Zoo - but obviously that didn't happen. Emmett, meanwhile, was mesmerized by the camera which was using the auto-timer (flashing in advance) to snap the photos.

At the end of the day Emmett was getting tired of having his photo taken but then he's having fun playing hide and seek.

Emmett, you truly are SMAzing and we all love you! 

To all of you who follow Emmett's Journey, we truly thank you for your prayers and support. Your kindness and thoughtful comments and emails truly are appreciated. Two years old! What is next for this SMAzing young man!

Comments

  Validation Code
Guest Comment 3 months ago
Site Visitor
+1
Poor Comment Good Comment
HAPPY BIRTHDAY, EMMETT!!! We hope you and your family have lots of fun celebrating this great occasion!!! Love to all, Uncle John, Aunt CarolAnn
Guest Comment 3 months ago
Site Visitor
+1
Poor Comment Good Comment
Happy 2nd Birthday Emmett! You are an amazing boy! Love Uncle R
Guest Comment 3 months ago
Site Visitor
Poor Comment Good Comment
Guest Comment 3 months ago
Site Visitor
Poor Comment Good Comment
Guest Comment 3 months ago
Site Visitor
+1
Poor Comment Good Comment
Happy Birthday Emmett! You are an amazing boy and you have an amazing family!
Guest Comment 3 months ago
Site Visitor
+1
Poor Comment Good Comment
Happy birthday sweet Emmett..... 2 years! Only God knew this journey that you and the family have been walking and what lies ahead..... we pray you will know how loved you are by SO MANY people around you!
Guest Comment 3 months ago
Site Visitor
+1
Poor Comment Good Comment
Emmett君、2歳のお誕生日おめでとうございます!Emmett君とご家族の喜びは、私達の喜びでもあります。これからも共にあり、祈ります。日本の母より
Frank Ewald 3 months ago
Site Visitor
Poor Comment Good Comment
Our friend and mom in Japan writes (Google translation) Emmett, you are having your 2 year old birthday! The pleasure of your family and Emmett is also our pleasure. I will pray your future. From a mother in Japan.Dear Mom in Japan, Thank you so much. We pray for your little one, your family, and for yourself. Thank you for keeping in touch with us!親愛なるお母さん、ありがとうございました。あなたの小さな人、あなたの家族、そしてあなたのために祈っています。私たちと連絡を取り合ってくれてありがとう!
Guest Comment 3 months ago
Site Visitor
+1
Poor Comment Good Comment
I loved watching Emmett watching his hand! You all must have your phones with you always, ready to record such gems. Happy belated birthday to this precious boy! Blessings to all, Luella Meighe

See the Difference!

Emmett's Uncle Ben captured this classic shot. Emmett has begun extending his arm and Ben caught it just as Emmett grabbed for his daddy's nose!

It's time for some Emmett clips that show his growth in stature but also in capability. The video on the right he was 16 months old while on the left he is 23 months old. Things to watch for are his head, arm, and finger movement. This one doesn't really allow you to see his feet too well. And isn't he pudgy as a 16 month old! And we will caution you right now, this is a family photo/video essay so get ready for it!

Those of you who know me well will appreciate this video clip. Believe it or not, Alisha asked for Mr. Potato Head. Apart from limited exposure at our house and a couple of stuffed Mr. Potato Heads at his house, Emmett has not been force fed this toy! Near the end of this video there is a cameo featuring Wendell the astronaut cat!

Ella the Elephant jumped into bed with Emmett to wake him up from his nap! While Ella has lost two of her legs, she's still a great source of amazement for Emmett (and Wendell!).

It has been very exciting to watch Emmett's hands and fingers as his dexterity improves. In the pic on the left (below) from April 2016 you can see how his wrists aren't held as you would expect and his fingers are quite curled. Now his wrists are doing much better and, when he tries, even his baby fingers can be straightened.

Watching Emmett play with toys is so much fun. Watching him supporting his head is absolutely fascinating. And then wait until he has a temper tantrum (we don't have that on video yet), where he will purposely toss his head off of the side of the head support and be stuck on the side. Scary at first but now that we know it is happening on purpose, it's a bit frustrating. And funny!

Of course, then there's taking advantage of Paw Patrol to get a fuss free tummy time workout. When Emmett was a baby and prior to being diagnosed with SMA, tummy time was encouraged to help strengthen his obviously weak muscles. Of course, the poor little kid couldn't do anything and would cry like crazy at what he must have felt was akin to torture. Now, he's literally making the beginning moves of crawling! Very beginning, mind you, but so exciting to watch.

It was sunny yesterday so Emmett was out for a neighbourhood roll! He had a lot of fun! The snow is also gone from his front yard so he was able to head out onto the grass. Next Tuesday his loaner Power Tiger chair will be exchanged for a little bit bigger chair. It will be more toddler friendly in that it will handle the bumps and lumps of a grassy terrain much better than this chair. The battery life should also be much improved.

Nothing like a storybook workout before bedtime!

Comments

  Validation Code