Daily/Weekly Thoughts
Daily/Weekly Thoughts

Mother's Day

Mother's Day - a time for mom's to sit back and relax, enjoying the adulation of their spouse and child (or children). There may even be a pet in the picture. But mom's don't sit back for very long. Alisha learned a lot from her mom, Pamela. She's learned from her grandmothers. She's learned from Rhonda, Josh's mom. And now Alisha is teaching all of us what it means to be a mom and to fight for every move that your little one makes. Alisha, Emmett is so blessed to have you as his mommy! We are blessed to call you our daughter and Josh our son-in-law.
 
In this photo you can probably see that Emmett is sitting with only his lower back supported, supporting his own head, and petting Wendell the cat! Thank God for the strength He has given to this family, for BC Childrens Hospital, Canuck Place, and the drug trial for Spinraza in which Emmett, one of 124 little ones world wide participating in this blind study, was getting this miracle drug. Only two out of three children in the study got the actual drug. Three little ones in the study at BC Children's lost the fight with SMA - our hearts and prayers go out to their mom's and dad's this day.
 
The future ahead is full of challenges but the present is full of smiles - unless a precocious two year old tries to squash you with his several hundred pound power wheelchair in which case you likely won't be smiling, but that frown only lasts a moment or two.
 
Spinal Muscular Atrophy, Type 1 - a fact of life for our family. We are fortunate that we can and do smile every day!
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Guest Comment 2 months ago
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Amazing! Prayers and love to you guys - great to see Emmett doing so well :)Billie xx
Frank Ewald 2 months ago
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Hi Billie, it is fantastically amazing to see what Emmett is doing! We are thrilled.

What do you do when it rains!

What do you do when it rains? Go outside and have fun!

It is no surprise that it rains in British Columbia. After all, the largest temperate rainforest in the world is found here in British Columbia. This spring also seems to have brought an abundance of rain to many regions across Canada. Emmett usually scrunches up his face and anxiously waits to be carried out of this ridiculous wet stuff. Alisha and Josh are gently pushing this little prima donna into exploring new horizons. Basic stuff like getting his hands dirty (guaranteed tears when that happens) and getting outside in the rain. Of course, with his first power chair we quickly learned that it was just as temperamental in rain as Emmett was - it would just stop working for a day or so if it even sensed inclement weather. This second chair is more robust but no chances are being taken so, with a giant blue poncho that protects both of them, we ventured out into the light rain. Emmett went a metre or two and just stopped. Unsure of what he was unsure about, we checked to make sure all health needs were okay and they were. Then realization dawned ... Emmett was listening to the raindrops pitter patter on the poncho. Just like you've probably listened to rain falling on a tent (which it always does when you go camping) or a barn tin roof (which if you've never experienced that, find a farmer and ask if you can sit in her/his barn the next time it rains). After a few moments of listening and contemplation, Emmett was off and then it was a challenge to get him to come back inside! In fact, when we finished our outside play and took off the poncho in the garage, Emmett turned his chair around and headed right back out into the rain where he just kept on going. Running after him with the poncho, we got them both covered up and then stayed outside for another 15 or 20 minutes of enjoyment.

With the occasional arrival of wonderful spring weather, Emmett has been taking more and more excursions. Neighbourhood walks, excursions to hardware stores, and to local parks. Believe it or not, Emmett attracts attention. It is quite something to see this little boy proficiently wheeling his chair about and walks often take longer due to conversations. While Emmett still plays bashful with strangers, he is getting to be more and more of a showman. He does love people and attention. Alisha and Josh were a bit wary, though, when a group of boys approached Emmett in a park. All was well as they were quite excited about this little 'baby' and his awesome wheelchair. They coined the term 'techno baby' and asked a lot of questions about Emmett and his chair that Josh and Alisha answered. Another outing was to the local Tulip fields organized by Canuck Place Abbotsford. It was a beautiful day and the colours were fantastic. (Remember, click on the photos to get a larger version.)

Another excursion was to our local library. They have a wonderful ramp for ease of access and Emmett hasn't been to the library since before his diagnosis, so this was a special moment. The library staff was wonderful and Alisha left with several new books for this voracious listener. I'm pretty sure that we've mentioned before that Emmett simply loves books. The best was Emmett waking up the other day, looking at his mom and wailing 'boo(k)'. The 'k' was maybe more implied than pronounced - but the intent was quite clear. He wanted a story and he wanted it now! This little boy is an avid listener (we don't think he can read yet!). And he loves to talk. Emmett is quite verbal when he warms up to people and so he responds too - not quite in a form that is understandable yet. His vocabulary is increasing and we are hearing more and more words every week. His two year old talk is incessant at times - so as he continues to jabber and get words out, we truly anticipate that sentences will follow. 

Of course, family photos would not be complete without a pic including Wendell the cat! Emmett also had a great time finding Easter Eggs - so much so that after finding every single one, they had to be removed from his Easter basket and re-hidden. Just so that Emmett could do it all over again!

Alisha and Josh also got the news that we have really known all along. The study was unblinded and Emmett has been receiving the actual drug throughout the trial period. As I say, we have known simply because of the miraculous improvements we have seen. Of course, we have to caution you that miracles when dealing with SMA Type 1 are small. Small, but when compiled together they are absolutely HUGE! Yes, small miracles are so fantastic. For example, I was preparing to pick him up the other day and my hand was underneath him when he arched his back and there was literally air between my hand and his back as he was stretched out on the table. Simply incredible. Not to mention holding him and while supporting only his body and back, he holds his head on his own! Each of these little steps, so often taken for granted with little ones, is a major feat for Emmett.

 

Emmett truly is a bundle of blessings.

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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!

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Guest Comment 3 months ago
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That is amazing! He is doing so well, lt warms my heart! He is beautiful!
Guest Comment 3 months ago
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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.

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