March 2016

It's SPRING TIME!

Emmett is already for spring. He's looking forward to lounging around in the backyard and spending time gardening and getting his hands and feet dirty. He is still not too impressed with bright sunlight so sunglasses go a long way towards making him feel more comfortable in the great

outdoors! Of course, once in a while Emmett will show off some of his teeth - two on the top and four on the bottom now. This little boy looks like quite the man with his baseball hat, glasses, and two of his teeth showing.

Like any little boy or girl in spring, Emmett's thoughts turn to ... his wheels! That's right. Emmett got a new set of wheels. His stroller and wagon are still in regular use but Emmett's Occupational Therapist has been working with some University Engineering students and have this amazing electric cart/scooter that Emmett can move about with. Right now he's only using the start and stop button, but eventually it has the potential of forward, reverse, and turn with three buttons that he can activate on his dashboard. To keep things simple, right now only one button is placed on his dashboard. It's so cute!

Obviously, all of us were very excited to see Emmett mobile. The first two

videos were the first time that the four grandparents saw Emmett in action using it. Lots of laughter taking place. Emmett also has some wrist braces to help him extend and straighten his wrists. This little boy takes everything in stride and doesn't fuss at all with these extras. I guess he knows it's helping him out!

A first birthday is exciting, but why are we making such a big deal about this here on Emmett's Journey? Well, last August one of Emmett's specialists gave him only five to six months to live. His lead specialist said that his lifespan had the potential to be much longer (well, much longer relative to six months), but certainly five to six months was a timeline that shook us all to the core. The silence was deafening. That is why we have celebrated Emmett's birthday each and every month since.

September, October, November, December, January, February, March ...

When I was a kid in grade school math was a huge challenge to me but I struggled, persevered, and worked hard. As a result my addition is pretty solid and I know that Emmett has passed that first timeline. Unfortunately, it is not because the specialist was wrong; they were probably very right. But, through the miracle of science, the power of prayer, and the love of his parents - Emmett is stronger now than he was at five months of age.

Spinal Muscular Atrophy, Type One is a challenging and terrifying disease. This SMA can strike at any age IF you have the right (I should probably say wrong) genetics. Both parents have to be carriers, and if they are then there is a 1:4 chance that their children will have SMA and a 2:4 chance that they will be SMA carriers but won't actually have the disease themselves. Scarey odds! If the disease presents itself before the child is six months old, then it is identified as Type 1. Emmett displayed symptoms before his diagnosis at five months but we didn't know what they were. Neither did the professionals during his check ups. It wasn't their fault. The highly trained nurses in the baby clinics and the family practice GP's saw a little boy who was demonstrated delayed development. SMA Type 1 would fall into a category of rare diseases that many medical practitioners may never see in their careers. Parents see their little one 24/7 and must be vigilant and push. And we've said before, when their GP did observe what concerned Alisha and Josh, Emmett was in to a paediatrician in less than 24 hours.

The one question that we have heard most often is "What is SMA, Type 1?". SMA being Spinal Muscular Atrophy. Here is another of my attempts to try to describe it. With almost no scientific phrases.

Picture your local multi-lane freeway. Traffic flowing perfectly both ways. Everything running like clockwork. No accidents. No flat tires. No construction (yes, that is a miracle in itself). Then see that some challenges intrude. Way ahead someone did get a flat tire or they ran out of gas resulting in a slight slow down of traffic. As you get closer to that incident, someone crashes into the rear end of another in the middle lanes. As you can imagine, traffic is slowed right down and comes to a virtual stop. That's irritating, but you know that in an hour or two you'll be back on your way. Maybe there's a bridge that is the only way across the country and it breaks, falling up, so that this main thoroughfare is out of commission or down to one lane for an unknown timeline. Or picture that there was a massive earthquake that has taken out literally kilometres of this highway. Obviously, the entire country is in chaos as a result of this natural disaster. Your car cannot ever traverse this expanse as the massive highway has literally disappeared. Since the government has no money to fix it (doesn't matter which country, as they're probably all broke), the only way to get from A to B now is to hike on foot or to take a donkey. But it is very hard to find a donkey, so you're left on foot. Of the hundreds of people who try to walk the distance, only a few can get through because it's tough. Climbing cliffs. Jumping crevasses (yes, there's ice everywhere). Crossing expanses of rushing water that has carried a few of the hikers off to the unknown. Very few of the hikers make it to their destination. Most just stop. The economy in this devastated area shuts down - completely. Until the engineers and construction crews can open up a new route nothing moves - and everyone hopes and prays for that a new route is opened.

This is similar to SMA, Type 1. The spinal column is the highway and it suffers a major blow. It is no longer healthy and the messages simply cannot get through. As a result the muscles begin to shut down. 

The light at the end of this tunnel (maybe my analogy should have been a train tunnel that runs through a mountain) is the pharmaceutical trial that Emmett was allowed to participate in, beginning last fall. This is the scientists developing a drug that revitalizes the spinal column so that messages from the brain can get through. If this was our highway that had been devastated by the earthquake, the first step would be to open up some kind of walking path. Maybe with ropes across the crevasses and rushing rivers - if you can go hand over hand on the rope you can make it. Tough and very slow, but possible for some. Then the crew sets up a swinging rope bridge which enables many more to cross. With time, sturdier and more expansive paths are created. This experimental drug in this trial is like this.

Officially we do not know if Emmett is getting the drug or a placebo. We celebrate every day knowing that Emmett is still with us. The messages from his brain are getting to his muscles. This is obvious as he sits in a baby seat and, with no side support but with support behind his head, is able to hold his head up. Something he couldn't do just a little while ago; he needed support padding on both sides of his head to stay upright. We laugh and cry at the same time as we watch him in the bathtub or pool as he rolls from his back to his front over and over. Or as he moves himself around the pool. Slowly, but he's doing it! Limited - but it is happening. Maybe it is a swinging rope bridge and a small path right now, but we pray and trust God for a miracle. We pray that the incredible team of miracle workers behind this drug trial make even greater break throughs. We laugh and cry and love every minute that we get to be with Emmett!

Emmett is ONE!

Every child is precious and every first birthday party is adorable. All of Emmett's family, however, are significantly biased because we feel blessed to celebrate this first year of life with this little boy. The most special little boy in the world! (Again, we're biased.) We thank God that Emmett is here with us and we pray for many more birthdays to come. We are thrilled that Emmett is doing well and we anxiously wait for the next signs of progress. Just yesterday Emmett, in the bathtub with his neck ring, rolled over. Literally rolled over from his back onto his stomach and looked like he was ready to do the doggie paddle!

Emmett got to enjoy the texture and feel of his cake but, as he's still fed by a gastric tube and takes nothing by mouth, the piece on his nose was as close as it got to his mouth. It was fun watching him play with his food. Literally something that this little boy just doesn't normally get to do! In fact, he hardly ever needs to wear a bib!

It isn't because he doesn't have choppers - as you can see here his teeth are present. Two on the top and three on the bottom. They have caused him some restless nights and he drools like crazy! We have also succeeded in spoiling him as Emmett is quite willing to put up a fuss if he doesn't get something that he wants. Setting him in his crib while grabbing something from his room is likely to create a scene because if it is not his nap-time then don't even think of using his crib! Or, if he wants more attention than he's getting Emmett isn't above using a 'fake' cough to cause a crowd around himself! Obviously, he has learned these attention seeking behaviours from his grandpa's!

Emmett's first birthday was an immediate family affair. Emmett and his parents, the Willms' family (except Jennie and Ben in Alberta) and the Ewald family. It's too extreme to call it reverse isolation, but Emmett is absolutely still being very protected from bugs, germs, and viruses. There are selected outings - like a hike to Cascade Falls that is just a short ride from Abbotsford. And not too many tourists at this time of year. Hint of a cold - put on a facemask and don't get close. Presents were in abundance - race car floor rug, jack-in-the-box, clothes, and more to celebrate this little man's first year of life.

One of Emmett's favourite iPad programs is a Xylophone that reacts when he touches the screen.

His face lit up when one of his presents was a real one! Of course, it's harder for him to play but that is something to work on in the upcoming months. Emmett loves a crowd and is fascinated by the colours, the sounds, and the activity that engulfs him when he is surrounded by others. We are looking forward to spring and summer when we hope he can be out and about more often.

Of course, Emmett's birthday wouldn't be complete without balloons. And there were a lot of them!

Happy Birthday, Emmett. You are God's precious gift and we love you. Thank you for being such an amazing little boy with such a huge smile!

To all of Emmett's online friends - thank you for your support, prayers, love and thoughtfulness. We can never tell you how much your support helps during the challenging times. Thank you and God Bless you!