One of Emmett’s first words was ‘Da-da’. When Emmett sees family photos – even now – the first thing he sees and says is ‘Da-da’. If a white car coes down the street, ‘Da-da’ comes out of Emmett’s mouth. When a car pulls in the driveway and Emmett hears it inside the house, ‘Da-da’ is his first thought and expression.
Emmett loves his daddy. Emmett also loves his mommy and there is no question about that. No reason for mommy insecurities with this little boy. The reason for this focus upon Daddy is that daddy leaves for work … and church … and other activities. Mommy almost never leaves so the security is there. But Emmett's daddy has to leave! And all of us surrounding Josh, Alisha, and Emmett know how very hard it is on him to be away from his little boy. We also know how hard he works to arrange and rearrange his work schedule so that he can be there for as many of Emmett's crucial moments as he can be!
Josh is a fantastic daddy and when you see the two of them together you will recognize that. Josh reads stories and allows Emmett to get out of some stretching exercises. Emmett and Josh play catch and explore the back yard and neighbourhood. And they go swimming together in the big local pool. There are so many things that they do together! It is, however, tough to watch hockey together as Emmett so far chants 'Off!', 'Off!', 'Off!', 'Off!', 'Off!', 'Off!', 'Off!', 'Off!', 'Off!', over and over again. He will learn, but right now hockey is simply not as good as Paw Patrol!
What is the sign of a great daddy? I am not qualified to answer that question, but according to Emmett, it is his daddy!
Josh, thanks for being a fantastic daddy.
Love from Alisha, Rhonda & Roger, Pamela & Frank
Emmett is a thinker!
You can see it in his every move as he contemplates life and then acts upon it. I wonder if any of his actions are random - or if all of them are for a purpose. For example, the other day Alisha was putting him down for a nap. He had a fish, his favourite toy of the day, in his hand (I say that because his favourite toy of the last couple of months is still a soft, pliable plastic hippopotamus). Emmett was waving it around while Alisha was getting him ready for his sleep time when Emmett started fussing. Looking to see what was wrong it was obvious that the toy was missing. Emmett pointed to the wall side of the crib - a place similar to the Bermuda triangle that has swallowed up innumerable soothers, toys, and syringes. (Yes, syringes! Emmett is surrounded by syringes on a daily basis so of course he wants to play with them. That's what little kids do. None of them ever have needles attached - just the blunt plastic end. Emmett doesn't need daily injections but the syringes are used multiple times a day to flush his G-tube, which is his feeding tube). Well, Alisha got down on her hands and knees to search under the crib for the toy - but no sign of that fish within easy reach. A moment later when she was fully committed to the task of crawling under the crib to get the fish, she heard Emmett giggling. Not finding the fish, she popped back up to see Emmett into a full on giggle and waving the plastic fish which was now tightly held in his fist! The little turkey had pulled a fast one on his mommy! So smart and so funny.
If you have been following the blog you know that a visit to the Vancouver Zoo has been in the works for months - well, it finally has happened. Lions, Tigers, and Bears! Oh My. And most important of all - a hippopotamus! Of course, it was a hot day so the hippo's just sat in the water and stared. But, ask Emmett if he saw them and he will respond with a resounding yes. Of course, the photo to our left where Emmett is obviously enthralled by some exotic animal ... it was a squirrel! LOL!
Too often people assume - incorrectly - that since Emmett has Spinal Muscular Atrophy that his mental capacity is limited. That is absolutely not the case and he is an extremely intelligent little one. SMA traps these little ones' bright minds inside bodies that simply don't respond. This disease has limited him in so many ways, but certainly not his ability to think. And with the help of Spinraza, his medical team, and his mom and dad - Emmett is working hard to regain the abilities that he lost. He has a new speech therapist who, after just meeting Emmett, commented that if it weren't for his disease he felt that Emmett would be chatting a mile a minute. Words are coming out more and more often. Grandma and Grandpa are quite clear! We are looking forward to even more chattering taking place.
We take so much for granted. We've said before that what happens with little ones with SMA, Type 1 is that the nervous system in the spinal column is quickly being eroded just like a mountain road can be washed away during spring floods. Sometimes so severely that it can never be repaired. Except in this case Emmett is a wonderful miracle baby involved in the drug trial for what is now called Spinraza. Approved by the FDA in the USA and hopefully approved in Canada by the end of this summer. This drug allows the messages from the brain to travel the spinal column network and make their way to Emmett's muscles. And not just to his limbs - but that is most evident. This goes to the muscles that tell his lungs to work, that tell his throat to swallow or cough, that tell his lips and tongue how to form words. SMA is the #1 genetic killer of children because it is such a terrible disease. Spinraza is the first medical approach to REVERSE the impact of this disease. There are many who have survived through significant medical intervention and who have reached a point where their regression has halted and for a time plateaued, but this is a degenerative disease. There is no evidence of a child or adult with SMA (there are different levels depending upon the severity of the disease and the age at which it is discovered) have improved. Until this amazing drug and, hopefully, even more amazing drugs that are going to be discovered in the future.
A year ago Emmett was checked out to see if a power wheelchair was a viable option. In May 2016 (the photo on the left is from May 2016! Isn't he cute!) he was just starting to lift his own head but he could not support it at all. He fully needed the head support. Any seams in the floor would jostle the chair and cause his head to flop and an adult would need to support it for him. If his arms fell from the chair arm rest, he could not pick them back up. He used one finger to manipulate the extremely sensitive joy stick - because he could not grasp it in his hand. What a difference a year makes. What a difference!
Emmett is getting ready to move back to a car seat from his car bed. He's meeting (so are Alisha and Josh) with part of his team of specialists to see if a car seat is an appropriate option. He cannot travel seated in the wheel chair yet - His neck strength is simply not strong enough - and he is outgrowing his car bed. Plus he cannot see anything from his car bed which is strapped to the floor. Alisha has found a rear facing car seat that can handle Emmett's size and weight for a few more months - and then it can be forward mounted. The wheel chair van needs a new exhaust - just one of those things. That van has been in the family for almost a year and it is invaluable for transporting Emmett, his wheel chair, and all of his gear. Hmmm - maybe we should have a blog post about all of the stuff that must go with Emmett.
Enjoy this photos and video clips. We hope that, like us, you marvel when you see the movement that simply was not present just twelve months ago!
In this video clip you may watch and yet not realize what miracle you are seeing. Emmett is reaching straight out in front of himself to grab the tinfoil shells. It wasn't that long ago that Emmett had to lift his arm from the side and then attempt to move it to the front - often an impossible task. Yet here we see Emmett reaching out straight in front. Passing things from one hand to the other. Doing things we could barely dream of him doing a year ago. Things that in the fall of 2015 we couldn't even comprehend.
Okay, this next one is a longer one. Just so you're prepared before you start to watch in.
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.