Edit: Emmett's 22nd lumbar puncture went well. He's at home now and looking forward to a normal day of school ... and rain!

It's October and it is time to focus on videos for this blog. So Fasten your seatbelt and click the links. And if you're wondering about the title "Number 22", keep reading. The focus on this issue of our blog is upon the joy that Emmett finds throughout his life. The joy that he shares with everyone around him! He is an amazing six year old and, like many of you, we absolutely find him to be our inspiration. Emmett's videos are of three of his favourite hobbies - Soccer, Horses, and Camping.

Why Number 22?

On October 27 Emmett will be getting his 22nd lumbar puncture and dose of the drug Spinraza. The focus of this drug was to stop the regression that was happening to the recipients' body. At 6 months of age Emmett was limited to slight movements of his right arm and turning his head from left to right. He could not sit up, lift up his head, and was having issues swallowing - to mention a few of the challenges he faced. All because Spinal Muscular Atrophy Type 1 was shutting down the pathways between his brain and his muscles; the result being that his muscles atrophied. Spinraza provides an alternate route - and we have said many times before that not only has it stopped the regression but it has reversed it. It isn't as good as the original because by the time Emmett received this treatment the path was too deteriorated to recoup everything. We have seen some really incredible results in infants who have received the drug at just a few days of age. And now there are two other drugs that are available - which is incredible because when Emmett was diagnosed in 2015 there was not a single treatment available. These videos show Emmett participating in activities that prior to the introduction of Spinraza in 2015 would have been virtually impossible for someone with SMA Type 1. This 6 year old boy works incredibly hard to do what he does. And he has so much fun and such an incredibly optimistic outlook. And we are so blessed with his medical team, his family, and his friends. We are so thankful!

BTW, Emmett knows that he needs the "POKE" but he do not be mislead into thinking that it is all smooth sailing. He intensely dislikes it.  If you're thinking about Emmett and the "POKE", send him a message by responding here or on FaceBook! We will probably read all of the comments for a reading class. And then add up all of the comments for a math lesson. And if you list your location then we'll look up all of the locations on a map!

and here's an old horse video that you may enjoy!

Hippo Therapy!

This is the absolute best. Emmett loves Hippos so getting involved in Hippo Therapy is the best thing ever. Of course, the challenge is that most hippopotami are wild animals so it took a lot of time to find a tame animal that would handle the lead. Of course, the hippo loved Emmett but wasn't too impressed with the support team that was around.

Well, of course that first picture is completely photoshopped and there is really no such thing as a program in which you can ride a hippo in Canada (I added that just in case there is a program for hippo riding somewhere else in the world). But Emmett really is involved in Hippotherapy! For those of you who are confused, Hippo in Greek means 'horse' while therapy obviously means care. Emmett is now involved in hippotherapy or equine/horse therapy and he absolutely loves it. A week ago he met his therapy horse, Fiona and got to feed her an apple. Yesterday, after the session, he got to feed Fiona a couple of carrots. In this photo you can actually see the carrot in mid-air on the way to Fiona's feeding mat. This is because, while Fiona is a kind and gentle old horse, her teeth are still quite massive and Emmett will always use a feeding mat or a bucket to share his treats. Honestly, don't you think that Fiona is smiling in this picture!

Emmett is getting a huge workout while riding Fiona at Valley Therapeutic Equestrian Associations' awesome facilities. And it takes a village to support this program as in addition to the horse being led around the indoor arena (and eventually outside on farm trails); there are trained adult support on both sides plus a physiotherapist. Even though Fiona is a short and fat horse - with a beautiful personality - the volunteer's arms get exhausted as they are reaching up and supporting Emmett so another volunteer is on hand to spell them off. And then dad or mom will be there too for support and care.

Helmet - ready! Back Grip belt (to aid volunteers in holding Emmett) - check! Huge waist pillow support (for comfort and security) - check! Fiona - triple check! Family photos - absolutely! Emmett had so much fun. At the end of the 30 minute session he was ready to get back in his power chair but five minutes later he was ready to get back on Fiona for another ride.

Emmett also had the opportunity to join a few other boys for an organized but informal game of soccer. It was intense! First up Sportsability BC was absolutely fantastic in making this happen. Second, there was not one crash. This is significant when 4 of the boys had never played a game of powerchair soccer before. And with most powerchairs being in the 20 to 30 thousand dollar range, you can appreciate that the parents were relieved. Not to mention that each chair weighs about 140 kg and is moved by electric motors with significant torque. Yes, this was a very good game.

Emmett has been practicing for a while on his own and the game simply was wonderful. Apart from a short break that the parents required, the soccer game lasted almost three hours.

Emmett has started a new school year and he is excited. His parents and medical team have elected to do distance education again this year and his school, Oak and Orca Bioregional School was happy to welcome us all back for another school year.

This family of four leads an idyllic, blissful life. What more could they ask for!

Probably a couple of nights of uninterrupted sleep! ha ha ha

Welcome Theodore Silas Willms

Emmett wants you to meet Theodore Silas Willms, his baby brother, who was born at 3:23 p.m. on August 12, 2021. Theodore weighed 8 pounds 1 ounce and was 20 1/2 inches tall. Most important, Emmett loves his little brother! Here are some Emmettism's which made everyone wonder just how Emmett was going to react to the arrival of this little one.

Three months ago Emmett said,

"I can hardly wait until the baby is three ... then the baby can play with me!"

"All babies do is cry and sleep and poop! Wah! Wah! Wah!" 

Emmett has said this over and over and over again.

While on a camping trip,

"The baby will have to sleep in the tent.

It cannot sleep in the RV because it will cry all night and keep me up!

The baby cannot sleep in the RV".

Of course, the irony here is that unbeknownst to Emmett, he keeps us awake most of the night even on his best sleeping night! Ha ha ha

"When the baby comes home from the hospital, I need my headphones! I don't want to listen to it crying!"

The progression from I'm not sure about this to headphones off and "Look at me, I'm holding Theodore" happened very fast!

While tucking Emmett in and kissing him good night, after stories and cuddles, Emmett pointedly exclaimed,

"I am the oldest brother but I am going to be first (to bed)? Theo should have an earlier bedtime!"

And so, when Theo was 3 days old, the sibling rivalry began.

"He's so soft!"

Emmett has already babysat his baby brother, Theodore. While his parents went out of the room, Emmett watched Theodore and reported every movement and sound to his mom and dad! Emmett loves his little brother and, in fact, since the first hour has not used his head phones. He thinks that Theodore is the very best!

Welcome to our family, baby Theodore!

Tiny Steps. Little Increments. Slight Changes. Monumental Life Improvement!

Lumbar Puncture #21 was completed today (June 30th just before lunch). The day before Emmett, his dad, and his mom were relaxing at Canuck Place and it was absolutely the good life! Relaxing in Muskoka chairs and enjoying the best that Vancouver had to offer. Emmett also got to hang out with his new friend, Gaia, who is a fully trained therapy dog who supports the kids and adults at Canuck Place. Gaia just recently took on this role, replacing Poppy, a Golden Retriever who - after many years of service at Canuck Place - died. Emmett doesn't like most dogs, but he really liked Poppy. And he really likes Gaia!

Spinraza is changing Emmett's world but the steps, which were rather large and visible in the first dozen shots, are now slight and less obvious. But they are still there - and for a drug whose initial hope was that the degradation would slow and possibly, hopefully even stop the regression - there is no question that it has absolutely made a positive change and brought much increased activity; it is a shout for joy when progress is evident. Over the winter and spring the one most obvious change that we've noticed is that Emmett's neck muscles are stronger. Last fall if he was in his power or manual chair and he tipped his head to far to the side, then he required assistance to lift his head back to the upright position. This spring, if he tosses his head too far, then almost every time he can get his head back upright on his own. Or when he is in his manual wheelchair then floor transition strips, which used to stop his progress, are usually obstacles that he can now power his way over. This drug is a miracle. This little boy is amazing. The life changes with this drug are incredible.

6 year old Emmett has just finished up kindergarten and he has received awesome results. And now he is getting ready for summer school. That is right, not summer holidays. Not a relaxing break away from the books. Not some downtime after getting another lumbar puncture. Emmett is looking forward to summer school starting and, in fact, during his kindergarten finale pool physio party, that was his last day of kindergarten wish. That school keeps on going. And so it will - but with a lot of fun escapades, we hope. 

Emmett is also excited about some house remodelling that he has helped complete. His school room/play room/storage space room, under Emmett's watchful eyes, has undergone a major transformation and been turned into a baby nursery. Emmett is looking forward to being a big brother in August. He is especially looking forward to the baby being three because then the baby will be able to talk and play and probably won't cry as much!

In the meantime, we will continue searching for hidden and mystical places or work on electrical circuits and submersible water pumps. Emmett's seat cooler, which required some upgrades, was helpful during the intense heat that we had here in the lower mainland. We stayed quite comfortable and indoors, except for our pool party, where the AC was functioning well and kept us all comfortable. We were fortunate.

Happy Summer, Everyone!

(unless you're in Australia or another part of the southern hemisphere, in which case it is Happy Winter!)