Emmett’s Journey 2018

January 2018

Unfortunately we’ve lost a couple of January 2018 posts. The lost posts gave updates about Emmett getting sick and the first two days that he was a BCCH. Sigh.

Sunday Afternoon Update: Day 3

Sunday, January 28, 2018

Day Three and Emmett is still fighting this bug. The challenge with RSV is that it seems to be hurting Emmett. Previous illnesses he has been miserable and felt horrible, but this rotten virus seems to be hurting him and there is nothing we can do. Obviously, he’s getting tylenol (or whatever the hospital provides) to relieve his aches and pains, but it doesn’t seem to be working very well. Yesterday afternoon he had a sponge bath and had about a half hour off of his bi-pap when he felt a bit better. But it didn’t last. And today so far he’s just feeling yucky.

That is, of course, scary. Alisha and Josh appreciate your prayers and support. They are checking FaceBook and Messenger and appreciate all of the messages – even if they aren’t always able to respond. Grandma Rhonda and Grandpa Roger are there today. Visiting with Emmett and allowing Alisha and Josh a change of scenery. (Hmmm, I wonder if they will go to the van and watch Toy Story!)

After Saturday’s sponge bath it was time for photos! Emmett was happy up to that point – but he did not want any photos!

Emmett’s usual bi-pap has been exchanged for hospital equipment during his stay. He’s receiving oxygen also. Normally at home it is just the regular atmosphere. Of course, his faithful bunny is with him. Tomorrow some of his Toy Story friends will join him. 

When he is sick, it takes all of Emmett’s energy to just handle the basics. There’s very little play and almost no chatter. Unfortunately, this RSV virus is going to have it grip on Emmett for a few more days. It has to run its course!

Thank You: Day 5 here we come!

Tuesday, January 30, 2018

Morning Post:

Thank you so much for your prayers and support. 

Emmett just had a chest x-ray and his lungs clearer than they were last night. He is still breathing with bi-pap support so there has been no invasive procedure. Obviously, the next 24 to 48 hours are going to be challenging.

According to a text from Alisha and Josh, his oxygen levels are better than yesterday. He still has very rapid breathing. His heart rate is still fast. And even though he is getting sedation via an IV, he’s still not sleeping well.

We will try to update the blog through the day ahead.

Update 12:45 p.m. PST

Emmett is certainly doing better today than yesterday. Phew. 

He is argumentative! He is talking and expressing himself … a little bit. He is moving his arms about. During rounds this morning the physicians are thinking that last night was the low point and that he’s on the way up. This is certainly what we hope he is experiencing.

Emmett is a fighter. And we see it.

Update 5:22 p.m. PST

Around 4 p.m. Emmett was intubated. It went well. While we were hopeful that this could be avoided, it is better to happen now rather than in a crisis moment in the middle of the night. Our fear is that Emmett, whose lungs are already weakened from SMA, would not be able to breathe unassisted after he recovers from this RSV virus. Alisha and Josh have received very reassuring medical opinions that Emmett will be able to breathe on his own after the tube has been removed. In fact, they will be encouraging Emmett to breathe himself even while being hooked up. It also means that Emmett no longer has the mask on.

Continue to pray for Emmett. He is Alisha and Josh’s darling little two year ten and a half month old little boy.

Please, Pray for Emmett

Tuesday, January 30, 2018

Emmett is having a very rough go right now. His medical team is discussing what to do next. He is not getting enough oxygen. They’re raising his bi-pap as much as they can. Obviously, they’re monitoring him, but if they deem that is not enough then they may intubate him. This is a more invasive procedure – and very scary for all of us.

I can only ask that you pray for him. He is in the hands of the best medical team available to him.

Alisha and Josh have barely left his side since being admitted Friday. Pam and I were with him all afternoon. While he was obviously struggling, we were optimistic. But now the doctors need to make some decisions and Emmett needs a boost of strength.

This illness hit him rapidly late Thursday night. It’s still progressing rapidly. There is a bunch of mucus/secretions in one of his lungs. They’re doing chest physio and suctioning every two to three hours to get it out. Intubation is a definite possibility if he continues to get worse. This could lead to a bacterial infection like pneumonia in his lungs. We beg our family and friends to pray – and get family and friends to pray.

Monday 9:11 p.m.

Yesterday was like a Tsunami Hit: Day 6

Wednesday, January 31, 2018

Emmett had as good of a night last night as he could be expected to have. Yesterday was very challenging for him and his parents. (I think they were much stronger than I was!) Your prayers and words of support are so appreciated.

Emmett’s Journey the last few days has been described by friends as being like a Tsumami of emotions. Over and over. This is very true.

Facebook is great but all it takes is one person to like a post and your newsfeed gets updated with a post that might already be old news. To ensure that you are not looking at events or sharing events that are out of sequence, we refer to you Emmett’s Journey. His blog will be as up to date as we can provide. Plus the sequence of events should be clearer than FaceBook provides. When you check the blog, you will possibly notice that facts under the title may be updated throughout the day.

Thank you so much. Emmett is an amazing little boy. Many of you know that and you’ve only met him through this blog. I promise that in person he is even more adorable than words and photos can portray. He is also stronger than any of us! I cannot believe how hard this little boy fights! In case you didn’t know already, he is our hero! Please note: There may not be too many photos over the next day or two.

February 2018

Literally Bounced Back to Health: Day 14

Emmett’s Beaten This RSV!

Thursday, February 08, 2018

Emmett seems to know that there is no time to waste. He was sick. Very sick with RSV and it was absolutely terrifying. But now he is better and he wants to come home. He hasn’t had any pain medication since the weekend. He’s required almost no deep suctioning since he was extubated on Monday – and none in the last 36 hours. Yesterday he went almost six hours with no breathing support. None. And when he is receiving support, it’s now on his normal home settings and with his little elephant nose mask. His lungs are clear. He’s eating food normally. Well, normally for Emmett as it’s by G-Tube. (Nothing by mouth. Not even water. While he’s dabbed his tongue in ice cream, he’s never licked a popsicle.) He’s talking and chatting and laughing. He’s bored out of his mind and wants stuff to do. The most fun he’s had this week was when they moved his bed to another room on Monday and then again on Tuesday. That was fun because as they moved down the hallway his Daniel Tiger balloon kept bumping it’s head on the ceiling. Emmett laughed at that. Of course, the nurses won’t race his bed up and down the hallways the way that he would like. It was just from room A to room B and then stopped. He wanted to keep on going.

He hasn’t even gotten to go up to the fifth floor to check out the outdoor patio and garden. Maybe another time – when he’s at the hospital visiting someone else! And not a patient himself.

Is this the normal recovery mode from RSV? Well, so far Emmett seems to have surprised most everyone on his medical team. It’s certainly surprised all of his family. But it hasn’t surprised Emmett. To him, it’s now just another day. He was sick and now he isn’t. Time to go exploring! But not at the hospital, at home please! When he was awake, he was not ready for any photographs so his hand was up to cover his face. But I assure you that behind that hand it is actually Emmett. When will he be discharged? Not today but just maybe … very soon.

To Abbotsford … And Home!

Friday, February 09, 2018

Emmett is at Home

To Abbotsford and then home! The journey continues.

Emmett’s Journey has been one of challenges with twists and turns that literally cause shivers to run up and down my spine. The past two weeks are ones that we want to forget but likely never will. Of course, there are some highlights that we will treasure. The strength that he has shown as he has rebounded so incredibly quickly from this fight with RSV; not even a flutter in his oxygen levels when he was extubated; and how he hides his face and shouts ‘no’ whenever his mommy tries to take his picture (but then he cranks up his ‘cheesy’ grin whenever anyone else takes a photo!). This photo was taken late yesterday afternoon. The NJ tube and the picc line were removed early in the evening. 

While we will never know the answers to many of our ‘why’ questions, we see daily answers to our ‘how’ questions. How he interacts with his medical team. How he loves visitors. How he simply never tires of having books read to him (he is, however, very selective about which book is read to him!). How tiny he looks while lying inert in his hospital bed yet how tall he is when sitting in his stroller or wheelchair. How he had to be restrained – and as tough as that was on him and us – it was fantastic to know that he was one of the first, if not the first, SMA Type 1 children at BCCH who required restraining for fear he would pull out tubes, IV’s, or whatever he could pull out! How strong this little guy is.

Thanks to the staff at British Columbia Children’s Hospital for their expertise and care. You’re simply there when we need you. The new facilities are wonderful.

And now it is back home. Access to more books. His power chair. His colourful mega-seat. His cat Wendell. And for his mom and dad, a return to a bit of normal in what has been two weeks of incredible emotion and stress. Alisha and Josh so much want to express their appreciation for your support. The kind words, thoughts, meals were so greatly appreciated. The prayers that were shared from around the world absolutely lifted their spirits. And lifted their little boy!

Thank you! We sincerely thank you,

Alisha, Josh, and Emmett.

While the sign is a painting that was photoshopped, this became Emmett’s Corner where family and friends gathered. Thank you to the facilities staff who cleaned around us and then after us. And the view out the window from Emmett’s Corner is fantastic – looking out over the city and then the mountains in the distance.

Emmett is acting out the scene from Toy Story 2 where there are two Buzz Lightyears and they fight. But only one of them has Andy’s name on his foot!

(If anyone has a tiny Woody the Cowboy that you no longer need, please let us know. Emmett lost his! This is the size that would just fit a three year old’s hand. We have lots of bigger ones, but lost the tiny one!)

How is Emmett? Just Fine!

Sunday, February 11, 2018

The question we’ve been hearing most frequently since Emmett’s release from the hospital on Friday is “How’s he doing?”. The answer is that he is still doing amazing. He has bounced back from this fight with the RSV virus that was actually complicated with a Rhinovirus so much faster than anyone anticipated. He will have a checkup in a couple of weeks to ensure that his lungs are clear – but right now this little man is ready to play soccer.

You can stop looking – in the last blog I mentioned that we were looking for a replacement Woody the Cowboy. Emmett has quite a few Woody the Cowboy toys, but had lost his tiny one. It has been missing for over a month and was really missed during the hospital stay – so we’re excited to announce that Woody the Cowboy has been found. Woody was hiding with some other toys in a very safe place. So safe that we couldn’t find him! Now Emmett has all of his ‘tiny’ buddies from Toy Story!

And what better way to show how Emmett is feeling than a bunch of photos and a video of him outside playing chase and soccer. Blog posts will now be reduced to a more regular one or two a month. Thank you for your fantastic support!

Consider Signing This Petition

Tuesday, February 20, 2018

We have frequently heard from family and friends who, after reading Emmett’s Journey, literally do not know what to do. That is understandable – Spinal Muscular Atrophy is a disease that defies understanding. Emmett has been receiving a drug that is now approved by Health Canada. It is now being considered by provincial governments, however, due to the drug’s exceptionally high cost, the drug is only being recommended to a very small subset of patients. Our government needs to approve this drug for all – it will improve the quality of life and literally save lives. Our government also needs to negotiate a much better price for this life saving drug, Spinraza.

Want to know what to do – take a couple of minutes and sign this petition. Share it with your friends.

Funding of Spinraza for all Canadian patients affected by Spinal Muscular Atrophy (SMA)

Want to know why? Because Emmett!

Emmett is still part of the long- term study of Spinraza. This means that for him the drug is provided at no charge and this will continue for the next few years. When Emmett began this drug trial, we didn’t know if he was on the real drug or a placebo. We didn’t know if it would work or not. We just knew that Emmett was losing strength and capability rapidly. His intelligent eyes asked us what was happening to him. And now we see him continuing to make progress and approaching his third birthday. We want him to see many more. 

And we want other families facing this rare genetic disease to have hope. Spinraza is a treatment. It is not a cure. But it is hope.

Please fill out this petition.

Funding of Spinraza for all Canadian patients affected by Spinal Muscular Atrophy (SMA)

March 2018

Happy Third Birthday!

Friday, March 09, 2018

Wow! Simply wow! Yesterday if you asked Emmett how old he was he was say two. When you asked him how old he would be tomorrow (which is now today) and he would respond three! Every now and then he will sing Happy Birthday to himself. And when you ask him what he wants for his birthday he will go “Ho! Ho! Ho!” because he wants Santa for his birthday. Well, unfortunately he is not going to get Santa but he is going to get something big and surprising. We will have a blog post in a few more days after his Saturday birthday party.

Today is low key. He’s going to heat to the Vancouver Zoo to enjoy the animals. If he’s lucky, maybe the hippopotamus will be active today! The bear close to the fence. The giraffe peering over the fence at him.

This is also a day to remember everything that has happened since his diagnosis two and a half years ago. How he had lost so much ability to move as Spinal Muscular Atrophy had such a grip on his body. And yet now he is stronger than ever. Sitting up in his Mega Seat for hours at a time playing catch and playing with his mom’s doll house. Travelling in a car seat after years of only being able to travel in a car bed. Hearing his excitement as he observes trucks, construction equipment, and buses through his van window. So many positive things have happened. 

Emmett has blessed our family. He is such a joyful little boy.

Big Birthday Surprise!

Monday, March 12, 2018

Emmett loves life and he thrives on new experiences. Of course, as you realize a simple cold can mean an ICU stay for Emmett so he does not always get to do things that most kids can do. Emmett loves buses. He sees them. He hears them. And he loves them. However, riding on a public bus would be so risky due to the challenge of picking up a cold so that simply has never happened. For part of his birthday celebration, we asked BC Transit if they could help us out – thinking that one of the small handicapped busses would make Emmett’s day. Well, BC Transit and First Transit Canada had a better ideal. A BIG BUS! It was fantastic. The team at First Transit Canada – BJ, James, and Calvin (to name a few) – were so enthusiastic about giving this little boy a special day. The big bus showed up and Emmett’s face was one of surprise as it rounded the corner and then pulled up to a stop in front of him. Then he rode around the block! Literally, around the block. Emmett had so much fun. And he had a bunch of his people, including his cousin Henry, along on the ride with him.

BC Transit and First Transit Canada – Thank you! You have given this little boy a memory that he won’t soon forget.

Emmett got to take his power chair right onto the bus. Driver Calvin ensured that Emmett and his chair were securely fastened in place. Not only does the bus lower down for entry, but it has a power ramp for incredibly easy access. Then a fully flat floor that was so easy for Emmett’s chair.

First Transit Supervisor James presented Emmett with a hat, sunglasses, and his very own bus. Even better, this bus is cardboard meaning that Emmett can easily pick it up. He drove it back and forth on his lap while waiting for the bus trip to start. Along with Emmett for the ride were his mom and dad, both sets of grandparents, his Aunt Jennie and her son Henry, and his Uncle Ben. Missing from the trip were Aunt Katie and Uncle Josh (Australia) and Uncle Ben (Jennie’s husband) in Alberta.

The ride around the block was superb. Emmett loved it and, back at the party room, regaled us with stories of his adventures that were combined with exaggerated head movements to show his audience just how exciting his ride was. He literally tossed his head to both sides and forwards/backwards with great enthusiasm in his retell. We want you to know, however, that Emmett’s head control was really good and he handled the turns, stops, and acceleration very well. This was Emmett’s first time being transported in his chair and facing forward. In his van, Emmett still uses either his car bed or his car seat. He doesn’t ride in his chair – yet.

While a bus is exciting enough, Emmett went back for even more party fun. A Daniel Tiger hat, freeze dance, peek-a-boo, and pin-the-tail-on-the-donkey were just some of the incredibly exciting activities.

Paw Patrol Masks and Disney character masks were a lot of fun … but so was an orange pie plate!

Emmett and Henry were too distracted to look at the camera. This birthday was made more special celebrating with family. It was awesome for Emmett to have his Aunt Jennie visiting from Calgary and then to chat on the phone with his Aunt Katie and Uncle Josh!

Three year old Emmett has a busy week ahead of him. Right now he is staying at Canuck Place in Vancouver – with his mom and dad – as he has a number of appointments in Vancouver at BCCH, getting his chair adjusted, and then on Wednesday it is time for another lumbar puncture and injection of Spinraza. All good things but certainly not the most fun. Emmett’s questions about this hospital trip? Were they going to put tubes up his nose? What about his mouth, were they going to put a tube down his mouth? Alisha and Josh have reassured him that that won’t happen this time. He doesn’t have a cold or RSV or anything like that. Phew! Wednesday is the big day and Emmett, all of us are here for you and supporting you. You’ve got this!

April 2018

Read A Book … Please!

Sunday, April 08, 2018

Oh my goodness, we are absolutely into the threes with this three-year-old. And like many inquisitive youngsters, he asks “What’s That!” at least a million times a day. Emmett is growing up. He no longer likes naps in the afternoon. What is life-saving for his mom and dad is that he loves (at least right now he does) quiet play time in his bed. This is also important because it is time to give his lungs some support and he gets a couple of hours of bi-pap time. It’s also lunch time as he gets his mid-day meal at about one. The little show-off has started exclaiming “Mmmmmm, Mmmmmm! Delicious!” as he gets set up for his snack. 

Of course, that is just silly (or as Emmett would say, ‘Sissy Grandpa!’ because he hasn’t figured out the ‘ll’ in silly and everyone always laughs when he says ‘sissy’!) because Emmett never tastes his food. This is probably one fact that surprises people the most. They realize that Emmett is a medically fragile little one. They know that Emmett has Spinal Muscular Atrophy, type 1 (hmmm? Does the classification change as Emmett develops and improves on the drug Spinraza?). But most do not realize that Emmett has not had food of any type nor any liquid by mouth since he was 6 months old. Let’s face it. People just don’t think about it and we don’t really talk about it. Emmett gets fed by a G-Tube so all food and liquid goes directly into his stomach. The advantages – he can keep playing while he eats. If he gets distracted, he doesn’t stop eating. No one ever has to say, ‘Emmett – eat your food before you leave the table!’. His food goes with him! The disadvantages – never getting ice cream or hamburger or pizza. And Emmett loves pizza! Another advantage is that instead of getting loaded up with chocolate on Easter morning, Emmett got loaded with little toys that were stuffed inside plastic egg shells. He absolutely had the most fun time during his Easter Egg hunt.

Emmett eats three times a day – similar to everyone else. He also has a slow, continuous feeding throughout the night. Obviously, his mom and dad don’t know if Emmett is hungry. It’s hard to say if Emmett even knows what hungry means? His mom and dad monitor his intake and are obviously aware of his output. Dieticians and nutritionists monitor his weight and ensure that, as he grows, his nutritional intake is adjusted to accommodate for his physical development. Emmett loves joining everyone at the table for meals. The difference being that he almost always prefers his plastic toy food to pretend to munch on. You see, he still has a huge aversion to getting his hands dirty or sticky or covered in food. He does like playing with raw carrots – partially because he likes Moose and Robert Munsch has a book where the Moose loves to eat carrots. *Grandpa’s note: literally minutes after writing about how fastidious Emmett is, he proves me wrong during a painting session. Here you have access to never before images of Emmett getting dirty! Mind you, every couple of minutes he needed to get his hands cleaned off!

Emmett’s ability to control his muscles is increasing with every dose of Spinraza that he receives. He received his last dose by lumbar puncture just a few days after his third birthday. I think it was his tenth dose. Since Emmett was part of the study we really don’t know – as he did go through a few sham injections to help protect the validity of the study. He is getting stronger – and he’s getting to be a very big boy.

When Emmett turned one year old, we wrote a blog post that we hoped would best describe in everyday language what Spinal Muscular Atrophy, Type 1 does to the body’s systems. You can read that post here. A person with SMA can be an infant right through to an adult (adult onset is SMA Type 4) and that person is either missing the SMN1 gene or has a mutated version of it. This SMN1 gene produces the SMN protein that motor neurons need to be healthy. Without this protein, the motor neurons gradually come to a stop which means that messages from the brain do not get through to the muscles. As we have said, at six months of age Emmett’s body was quickly shutting down. The drug Spinraza works with a similar gene, known as SMN2, to enhance this gene’s ability to produce SMN protein. This amazing drug, combined with ongoing therapy and intensive intervention from his mom, dad, and a great medical team, mean that Emmett is continuing to thrive. Will he someday be able to eat one of the cookies that he helps bake? There simply isn’t an answer for that, but we hope so. Just like Emmett is now sitting up by himself or holding his head completely on his own. Yes, he does need to use a back brace to help him stay upright but he is fully in charge of holding his head up. Until you have someone struggling to support their own head, you don’t think about how bizarrely designed our bodies are resulting in the neck having to hold up a 5-to-11-pound head! It was just two years ago that Emmett started just lifting his own head – he has come so far and it is exciting to think about what may be next.

Those who frequent our blog often know that it is a glorified family home video time, and here in video you see Emmett painting and then outside rolling about. He can now start rolling the chair forward and backwards on his own. He can turn. And he loves sitting in it and playing catch. He will literally play for hours (of course, that means that someone else is literally playing catch for hours too!) But his excitement when he realized that there was a slight slope on his sidewalk was, well, turn up the volume and watch the video clip to see and hear what he thought about rolling on his own. Thank you for your patience with our family film night!

Then there’s his language. Say the wrong thing and you’re going to regret it, because even if you’re in another room this little boy will hear it and repeat it perfectly. Not to say that anyone in our extended family will ever say the wrong thing. This little boy is like a parrot. But he does far more than just mimic us. He chatters and jabbers non-stop when it is his quiet time. Along with the “What’s This?” we hear throughout the day to which Emmett fully expects an answer. And it had better be a reasonable one, too. For weeks as we’ve walked around our condo complex, we have counted the numbers from 1 up to our unit 18. He really likes numbers that have a 3 but his favourite number is 8. Inside he loves playing with toys but he simply loves books. He literally can almost tell us his favourite stories. And the infamous ‘Book! Book! Book!’ has now been upgraded to ‘Read a book  …  please!’ Usually, the please is an afterthought or has been prompted by an adult. Regardless, it’s pretty thrilling to hear the language pouring out of this little one.

This coming summer Emmett is going to be participating in Charlie and Florence’s 5/10 K roll/walk/run to end SMA. It will be held on August 19, 2018 in Stanley Park. You should start making plans to join us. Or sponsor Emmett as he rolls through the 5 K. It was August 2015 that Emmett was diagnosed with Spinal Muscular Atrophy, Type 1.

May 2018

A Busy Boy!

Thursday, May 10, 2018

Emmett is a busy boy. He is constantly on the go. This month our blog is going to be a photo montage of events Emmett has participated in – things he loves doing. Enjoy! We will start off with our little show off posing for the camera. To help keep things in perspective – when Emmett was one year old and then he would have to be ‘posed’ for a photo. And he was in that position until you moved him out of it. Now as a three year old he is able to pose himself! What a change!

In this series of photos, Emmett is considering a career in modelling. He’s holding his face to, obviously, highlight his cheekbones!

The photos above are all taken in Emmett’s front yard. The blossoms have been amazing, although late, this spring. As much as possible, Emmett loves being outside!

A day trip to Harrison Lake allowed Emmett some awesome scenery and to meet new friends.

Emmett loves playing cars …

and he loved going to the race track to cheer on his grandpa and his grandpa’s car. We were quite surprised that the noise did not bother him.

The aquarium is a really great place to visit. Although the Zoo is his favourite. Emmett knows how to spell Z – O – O so his mom and dad can no longer make plans by spelling the word!

The local tulip farm is incredible. A huge thanks to Canuck Place for hosting an evening there!

One last cheesy pose from a little boy who has stolen our hearts! 

Emmett has just had his power chair adjusted. Now his third gear is as fast as his fourth gear used to be. His fourth gear has jumped from the speed of a slow adult walk to a brisk adult walk. This little one is getting places faster. And that is a good thing, because Emmett is planning on going places!

June 2018

The Orange Hippos!

Thursday, June 07, 2018

Who Are The Orange Hippos? We are!

Yes, that is us. We are the Orange Hippos. If you’re thinking that this is not the most flattering name, well, maybe it isn’t. Some might say that it is quite appropriate – although none of us are orange. Personally, I’m incredibly proud to be an Orange Hippo. I honestly cannot think of anything better. For you see, Emmett has a lot of say in our combined households and when he chose the team’s name, that became our team. He had three names to choose from and I cannot even remember what the other two names were. Suffice it to say that they were not memorable. Plus, Emmett didn’t like them. You may have gathered by now, that if Emmett likes and approves something, then I adore it. I’m his grandpa so I can do that!

If you’ve been reading the blog then you know that Emmett loves Hippos. He went through a number of animals early on, but Hippos have been a favourite for nigh unto two years. (I’ve always wanted to say ‘nigh unto’ so I deleted nearly and typed in ‘nigh unto’. And now look at how many times I’ve used ‘nigh unto’. Things like this make me happy.) Orange is his favourite colour. It has been for n … nearly two years. Carrots are his favourite food – because they’re orange, of course. They are also a lot easier to hold that peas or watermelon. Plus, one of Emmett’s favourite squeeze toys is a little orange hippo. So, Emmett instantly chose the Orange Hippos as our team’s name.

You may be wondering what team this is. Well, of course, this is Emmett’s Team. We are going to be walking/rolling/running in Florence and Charlie’s 10K to end SMA. And we are looking for people to sponsor us – tax receipts are available. This run takes place on August 19, 2018 in Stanley Park, Vancouver. If you want to walk/roll/run with us, you’re more than welcome to. We would love to have you join us! Details are in links at the bottom of this blog entry.

What is amazingly special for all of us Orange Hippo’s is that it was on August 19, 2015 that Emmett was diagnosed with Spinal Muscular Atrophy, Type 1. Three years ago.  Oh my goodness, that is a day that we will not forget. Ever. All of our lives changed in an instant – and we were sort of preparing ourselves for some difficult news. There is absolutely nothing that can prepare you for a five-month-old getting a diagnosis of Spinal Muscular Atrophy, Type 1. A disease that three years ago had no medical options for treatment. A genetic disease that took away the life of most little ones afflicted with it BEFORE they reached two years of age.

10 K is absolutely nothing compared to the fight that Emmett has had for his entire life.  Emmett is looking forward to participating in this walk. He has had his power chair tuned up and the speed limiter has been raised from 50% to 75% – so he can move along at a brisk walking pace. He may tire me out! Fundraising efforts like Florence and Charlies 10K to end SMA have helped with research so that treatment, like the miracle drug Spinraza, has not only been discovered but is the ONLY approved treatment in Canada, the USA, and many other countries in the world. This drug is not a cure; it is a treatment. It is a miracle, but we want the miracle of a cure. So even a small donation to our walk and roll (look at me, did you really think that I would be running!) will help CureSMA Canada. These funds help everyone afflicted by this disease. (*These funds do not go to Emmett. He does benefit from them. These funds go to CureSMA Canada to help with research.)

The walk itself is named after Florence and Charlie, who are two little girls. Florence lost her battle with SMA. Charlie also has SMA Type 1 and is now on Spinraza and is fighting this genetic disease with everything that she has. The girls’ parents started this run a few years ago and they are working hard to raise funds to find a cure for SMA. All funds raised go to CureSMA Canada. You see, there are children and young adults across our country that are fighting this disease. And now they’re also fighting to get access to Spinraza, the only treatment that is available for SMA. This drug wasn’t available in 2015 when Emmett was diagnosed. There was no available treatment. Emmett was lucky in that he was one of 124 kids from around the globe that was invited to participate in a blind study for an experimental drug. The drug that was eventually named Spinraza.

This, by the way, is Po. Po is the latest Hippo to join Emmett’s menagerie of stuffed, rubber, and plastic hippos. What is unique about Po is his size! We have decided that Po is a grandpa hippo! Po has guarded Emmett at night. The issue with this is that Po has absolutely startled (scared the pants off, to be truthful) both Alisha and Josh when they checked up on Emmett in the evening. A dark room. A large creature hovering over Emmett. You get the picture. Emmett loves sleeping with a few choice members of his menagerie. He invited Po into his bed once and quickly kicked him out. Po is just too big!

To make a pledge for the Orange Hippos or, even better, to sign up for the run, please click on this link to the Running Room. https://www.events.runningroom.com/site/?raceId=15056, this will take you right to Florence and Charlie’s 10K event. Then go to the Fundraising link. There click on “Search by Name” and type in Alisha Willms. She is Emmett’s mom and our Orange Hippos’ Team Captain. Then you can pledge your amount.

To sign up to participate, click on the Registration link. Select the Team 10K. Then select a username or login with your Facebook account. As you work your way through the form, click on Team Member. Another field will appear where you can select the Orange Hippos. The password that you need to complete everything is 

sur68giy

Thank you for your words of encouragement, your moral support, your prayers, and for considering sponsoring us for this worthy cause. 

July 2018

Support the Orange Hippos

Emmett is raising funds for CureSMA Canada. Click here to go to Emmett’s personal page on the Running Room to make a donation. Any amount would be appreciated. If this link isn’t working, then copy and paste this text into your internet browser. ** All links have expired**

On August 19, 2015 Emmett was just a few months old and he was diagnosed with Spinal Muscular Atrophy, Type 1. We already knew that Emmett was struggling. He couldn’t hold up his head. He couldn’t move his legs. His strength in his arms – his entire body – was failing quickly. The specialists at B.C. Children’s Hospital told his parents that there was no treatment. But that there was an experimental trial which Emmett might qualify for – and he did. Now, this experimental drug has been approved in Canada, the U.S.A., and several other countries. Funding has yet to be sorted out in Canada and this is obviously a challenge, but this drug works miracles. Spinraza, the name of this drug, is a treatment. Emmett requires a lumbar puncture every four months. He endures this like a champ and we know that this ten kilometre roll through beautiful Stanley Park in Vancouver is going to be amazing. It is also going to take forever because, well, Emmett is three. Need I say more! 

Yes, I do. That is that more research needs to be done to find a cure. A treatment is incredible, a CURE would be beyond belief. Please support us.

Are those links not working for you! Then try this.

1. Charlie & Florence’s 10K to End SMA – and then click on the Fundraising tab. Step 2 is next.

2. Enter Emmett Willms in the behalf of box, then under search by name enter Emmett’s name (it should pop up before you’ve finished typing it). There are several other Orange Hippos, so you can sponsor them if you chose. The funds all go to support the same great cause.

July 13, 2018

Hurray! No More Stroller!

Friday, July 13, 2018 

Emmett just had a lumbar puncture and an injection of Spinraza – also known as Nusinersen – on Wednesday, July 11th. This means a very full morning at BCCH and part of the afternoon. Since Emmett started receiving this drug almost three years ago (he was involved in the blind scientific study to test this drug) the required time at the hospital has been greatly reduced. This is good but it also means that many activities are compressed into the morning.

Hanging out with Emmett at BCCH is sort of like being Cliff from Cheers while he is hanging out with Norm at Cheers (too young to understand – check out Google). Literally from the moment we parked in a parking spot staff on their way to work spotted him and called out to chat with Emmett. We didn’t walk down one hospital corridor without someone exclaiming “Emmett!” and engaging in an enjoyable conversation with Emmett and Alisha. All of them were wonderful conversations but the best was a nurse who had cared for him while he was battling RSV. She was amazed to see this little boy sitting in his stroller (mini-manual wheelchair), talking, and not only alert but also very intelligent (hmmm, bit of grandparent bias possibly there!). 

The challenge of this intelligence is that Emmett could tell that these events and tests were leading up to a procedure. The blood work first thing in the morning was very uncomfortable and never something that any little one enjoys. Emmett milked that for all it was worth – showing everyone that he was chatting with the two bandaids (ouch, yes, it took two tries to find one of his tiny veins). Off to physio where he underwent an assessment. This is a tough one for a grandparent to watch, because the assessment is part of the study so only specific devices can be used to encourage him. Well, they aren’t the right ones so Emmett certainly doesn’t show off his best moves. Which means that I’m trying to bite my tongue and not say but Emmett can do so much more! Or the more tough one, “What kind of a ridiculous test is that for a kid with Spinal Muscular Atrophy!” – but I didn’t say it (too loudly or in front of too many people!).

There’s a FaceBook post about four kids, Emmett being one of them, in Charlie and Florence’s 10K to End SMA in which these four kids are being recognized and also described as warriors. That is so absolutely true. Warriors in the fight against SMA. During the initial study our family wasn’t allowed to be present during the Lumbar Puncture. Now we are and while we want to be there for Emmett – there’s a part of us that really doesn’t want to be there. You can understand that, I’m sure. He knew it was coming. He asked that it didn’t happen but knew that it would. He cried and fussed and wiggled and twisted. And as much as this hurt to see it was also amazing. You see, his voice is now so much louder than it used to be. He can wiggle and twist! HE CAN WIGGLE AND TWIST! Oh my goodness, this big little boy can move.

With the next procedure in four months he will be getting additional sedation – it’s too hard to do a lumbar puncture when the little boy who is getting this procedure is trying to dance about the bed. A Painful procedure, no doubt, but this little warrior was up and about and happy (relatively) and ready to chat in less than 30 minutes. He thanked the doctors and nurses and procedure coordinators as he left. And stopped with his mommy and chatted with the family of a very tiny little one who was going in for his first spinraza shot. That little guy has got a long and tough road ahead – but he’s getting the best care available. Even though the drug is still not easily accessible in Canada (there are so many funding questions and roadblocks) the pharmaceutical company is working with hospitals and families to make it available. Especially for children who are diagnosed with SMA Type One. After that chat, Emmett got loaded into the van where he could finish watching Cars (this was a hardship for Emmett that he watched only under significant protest. And only because his grandpa forced him to watch it!) and then watched his favourite Toy Story 2 with Woody the Cowboy and Buzz (and Buzz 2). We have lost count on how many times Emmett has been to Vancouver – and he’s watched Toy Story 2 every time!

We are also thrilled that Emmett gets to borrow a KidsWalk for the next few weeks. This is a really cool walker set up that bears all of Emmett’s weight but allows his feet to be on the ground.  Emmett only had three short sessions in it, but he learned to push himself backwards using this hands and feet. The smile on his face when with his legs only he is moving himself backwards! This is such a beginning stage and so obviously even tinier than baby steps, but it is absolutely a step. This little boy is starting to take steps. He’s starting to walk!

You’re probably wondering about the stroller title. Emmett got this cool stroller when he was two so it will still be with him for years to come. However, it is not Emmett’s first choice for transportation. And, Emmett’s power chair – in his own words – would just “Stop”! Sometimes it would stop more than it would run so it was very frustrating for everyone as it was malfunctioning terribly. As a result it went in for repairs – literally on the same day that Emmett went in to Vancouver to prepare for his injection. And his chair came back yesterday. When his mom told him that the shop phoned and that his power chair was on it’s way back he paused and then cheered. It took a moment for us to decipher what he said next but as he kept repeating it, there was no question that it was ‘Hurray! No More Stroller!’ This little boy loves the independence that his power chair provides.

August 19th Emmett is going to be rolling in Charlie and Florence’s 10K to End SMA. He has named his team the Orange Hippos. Emmett has already raised $250 for the fight against SMA. If you would like to sponsor him, you can click on this link: Click here

We stopped to see the ocean at Squamish, B.C.  That’s Shannon Falls in the background. The wind was strong enough to blow us over. We almost didn’t get out of the car as we thought Emmett would hate it. Rather, he absolutely loved it!

August 2018

Support The Orange Hippos!

We might send you an Orange Hippos T-Shirt!

August 1, 2018

Yes, I’m posting once more about the Roll-a-Thon that Emmett is going to be participating in this coming August 19 at Stanley Park. Florence & Charlie’s 10K to End SMA is a tremendous cause. When Emmett was six months old he participated in his first Florence & Charlie’s 10K to End SMA but he hasn’t been strong enough or well enough to participate since. Until this year. When he was six months he rolled along in a stroller. This year he will be rolling along using his power chair. Funds raised go to CureSMA Canada – that means these funds may very well be supporting someone in your neighbourhood. Orange Hippo team members will be wearing the amazing Orange Hippo T-Shirt. One lucky person who has sponsored The Orange Hippos in Florence & Charlie’s 10K to End SMA will be randomlychosen to receive an Orange Hippos T-Shirt. Seriously. If you sponsor anyone on The Orange Hippos with a $25 or more donation, then your name will be entered into the draw to win one of these amazing shirts that were inspired by Emmett.

If you make your donation in support of Emmett, then your name will be entered 3X’s into this random give-away. All names supporting the Orange Hippos up to and including August 19th will be entered into this random giveaway. If you listed your name anonymously then I’m sorry but we have no way of knowing who you are – we only have access to what has been shared publicly. The odds of getting a shirt are probably not very good. Likely between a 1 in 100 to a 1 in 200 chance. The odds of having SMA – if both parents are silent carriers – is 1 in 4. The odds of being a silent carrier of SMA – if both parents are silent carriers – is 2 in 4. August is Spinal Muscular Atrophy awareness month. This rare disease happens more frequently than you may be aware and Florence and Charlie’s 10K to End SMA is supporting those searching for a cure. Emmett is an amazing little boy who appreciates your support.

If you want to support Emmett in this roll-a-thon, please click here to make a donation.

Come Roll With Me!

August 10, 2018

Come Roll With Me …

and if you don’t roll, then you can walk or run. In nine days from now, on August 19th, Emmett and family and friends (aka The Orange Hippos) are going to be rolling, walking, and perhaps even running in Florence and Charlie’s 10K to End SMA. Emmett and The Orange Hippos have so far raised over $5000 towards this very important cause. And it’s not too late to make a donation, you can click the link to take you to the Running Room where you can make a donation and receive a tax receipt. If you want to support Emmett in this roll-a-thon, please click here to make a donation.

If you want to join us and walk at 10 a.m. on August 19th, we’ll be at Stanley Park in Vancouver, B.C. The rolling (and walking for those without wheels) will begin from Ceperly Park, Second Beach Gazebo. 

Emmett has been busy and happy this month. He participated at his churches Vacation Bible Camp and loved watching and interacting with the other kids. His mom and dad plus his grandparents have all been busy too. As a result this month’s blog is going to be a lot of photos! Mainly of Emmett! Hope you enjoy!

Canuck Place Abbotsford hosted a horseback day. The only downside for Emmett was that the white horse he wanted to ride was deemed to ‘spirited’ for him. He needed a calm and steady horse. Maybe next year he’ll be ready for the spirited white horse! His comments after were simple – ‘Again! Again!’

Emmett is still experimenting with this standup walker. He’s making great progress but finds that the seat is a bit tough on his boy parts!

Seeing Emmett sitting is so fantastic. Today I had him sitting on the kitchen counter while his mom and I were talking. I was right there to catch any potential fall, but needed something from his room and asked Emmett if he could sit there for me. He planted both hands on the countertop – like the top photo – and was ready for me to leave. Of course, we are a long way from that stage yet but Emmett’s getting ready for it!

Want to win an Orange Hippos T-Shirt. Simply sponsor anyone on The Orange Hippos with a $25 or more donation, then your name will be entered into the draw to win one of these amazing shirts that were inspired by Emmett.

If you make your donation in support of Emmett, then your name will be entered 3X’s into this random give-away. All names supporting the Orange Hippos up to and including August 19th will be entered into this random giveaway. If you listed your name anonymously then I’m sorry but we have no way of knowing who you are – we only have access to what has been shared publicly. The odds of getting a shirt are probably not very good. Likely between a 1 in 100 to a 1 in 200 chance. The odds of having SMA – if both parents are silent carriers – is 1 in 4. The odds of being a silent carrier of SMA – if both parents are silent carriers – is 2 in 4. August is Spinal Muscular Atrophy awareness month. This rare disease happens more frequently than you may be aware and Florence and Charlie’s 10K to End SMA is supporting those searching for a cure. Emmett is an amazing little boy who appreciates your support.

If you want to support Emmett in this roll-a-thon, please click here to make a donation.

**All donation page links have expired**

A Great 10 K!

August 20, 2018

Race Day. 10K! Checking the weather for heat updates … smoke updates … Ensuring that enough liquid to stay hydrated is on hand … Having a healthy snack …Waiting at the start line … Adrenaline sets in! Ready … Set … Go! That is the pre-race scenario for most racers.

For The Orange Hippos it doesn’t look anything like that. The check list is:  Suction machine √ Spare Suction Machine √ Food Pump √ Chair battery charged √ Hand Sanitizer √ Bi-Pap machine – it can stay in the van for the ride home √. Go! Wait, what! Go? We’re already on our way – why did they take so long to say go!

It was a fantastic day and huge congratulations to the Team that put on Florence and Charlies’ 10K to End SMA. They raised in the neighbourhood of $40 000.00 for CureSMA Canada. Of that, our amazing supporters behind The Orange Hippos raised just over $6 300.00 and we greatly appreciate your support for this cause that is so important to our family. The winner of The Orange Hippos T-Shirt draw is Billie – a lovely young lady from England who has been a long time fan of Emmett. Congratulations, Billie! We will get your t-shirt off to you shortly.  Family and friends are so important. One of Emmett’s best friends, Felicity, and her mom were also there running and rolling by Emmett’s side. It was so good to celebrate together.

While getting prepared for the race Emmett had a chance to chat with a fellow participant – his amazing neurologist from BC’s Childrens’ Hospital. She has participated in every one of Florence and Charlie’s 10K to End SMA events. She also is involved as a key member of most, if not all, of the B.C. kids who have Spinal Muscular Atrophy. Any Type. Alisha and Josh met with her three years ago as Emmett’s diagnosis was made at BC Children’s Hospital and she has been by their side supporting them since.  His medical team is absolutely amazing. There is no question that the medical team that is involved with Emmett is a huge part of this families’ life.

Emmett got off to a great start and was the race leader for the first 100 metres. It was a good thing that the starter wasn’t right at the start line or they would have noticed that Emmett took off a few seconds before the offical ‘GO!’ was sounded. About 400 metres into the race Emmett needed to stop under a shade tree to lie down for 5 or so minutes. He got quite choked up – was it the excitement of the race? the smoke haze from BC’s wild fires? The rather strong fishy smell from the ocean? Sure, each of those had a little bit to do with it, but the primary factor is because Spinal Muscular Atrophy interrupts activities and demands attention at a moment’s notice. SMA stops the brain from communicating with the muscles – and not just simple things like legs and arms. He cannot swallow. He has challenges breathing. SMA has a major impact upon his life and upon every other child and adult afflicted by this disease. A suction machine to remove saliva that Emmett cannot clear on his own is simply a regular part of life. The fact that he’d been cruising around the park pavilion and the area around Ceperley Park for just over an hour meant that he’d had quite a bit of excitement and exertion before the race even started. If you’re wondering about the sepia tone in the photos, that is being caused by the extensive forest fires in B.C. and the smoke is now having a huge impact – including Stanley Park.

Here we have a confession to make – Emmett did not cover all 10K. That is simply not a reasonable challenge for a three year old. It really doesn’t have as much to do with the fact that Emmett has SMA Type 1 as it has to do with being three. Thus being distracted by anything and everything that is around him. Emmett did go through the start and finish arch at least a dozen times. He loved looking at all of the rocks out on the beach. As he looked out at all of the ships moored out on English Bay his comment was, “Follow the Leader!”. I had to take a second look and then observed all the ships moored in a line. At the awesome stone stairs that led down to the beach, Emmett had to stop – obviously. But he directed me to go down the stairs and back up. He still got to experience the stairs. Going in circles for at least 20 minutes on the smooth concrete pavilion floor. Then he played bashful while meeting all kinds of people – there were over a 100 participants and I’m guessing at least 20 of those were in wheel chairs/power chairs/mobility strollers.

After that initial pit stop at the 400 metre mark Emmett was a solid competitor. Passing by the swimming pool was an understandable challenge – he really wanted to go swimming (the pool being at about the 700 metre mark meant for another early race slow down). Staying on the right side of the pathway was a challenge. Emmett is three and he likes meandering strolls rather than straight line express routes – and at busy Stanley Park there were one or two near misses! Fortunately most people are amazingly understanding about a toddler in a wheelchair who nearly mows them down! Emmett probably covered about 3 kilometres of the total route, but do not let that mislead you. Throughout this excursion he probably covered 8 kilometres – I know that because while I was with him my iPhone recorded over 10 000 steps. There were several instances where I was the pivot point with Emmett doing circles around me making me dizzy. And there were 5 other adults also trying to keep up with Emmett. So there’s no doubt that Emmett did the equivalent of between 12 000 and 16 000 steps!

Crossing the finish line brought this 10K roll to an end. This is just one small facet of the endurance race that all of us, Emmett included, are in.

August is SMA Awareness month. Throughout this blog there is a lot of information about SMA. You can also visit CureSMA Canada or CureSMA USA. If you’re outside of these two countries, there are advocacy groups in many other countries.

September 2018

Three and a Half Years Old: Watch These Moves!

September 8, 2018

It was a little over two years ago that Emmett picked his head up off of his mommy’s chest all by himself. Now he’s holding his head ‘while‘ being picked up by his daddy ‘WHILE’ lying on his tummy on the floor! This is an absolutely amazing first. Emmett, you are such an inspiration!

This next video is a little bit on the long side, but I love seeing his sense of humour. I love seeing how he conveniently ignores requests – in other words disobeys – in order that he can help and prolong staying out of bed! Ha ha ha. And most of all, I love watching Emmett wheel himself around. Emmett is wearing his back brace in this video clip. He can sit up but for longer periods of time the back brace is essential.

Of course, what does every little boy love to do when they go to the park … you will notice at the end of the video clip that as strong as Emmett’s neck now is, he does have some moments when he hits tree roots while off roading! But that didn’t stop him. He just needed an adjustment … and then he headed back to the smoother ground of the pathway.

We want to give you an update on the Orange Hippos fundraising results for CureSMA Canada at Florence and Charlie’s 10K to End SMA. Our $6200 fundraising total was increased to over $8200 as Valley Carriers – where Emmett’s Grandpa Roger and Uncle Ben work – made a substantial donation to CureSMA Canada. Thank you so much!

While we are saying thank you’s we also have to thank Canadian Tire Abbotsford for supplying us with a Motomaster Pure Sine Power Inverter and a Motomaster deep cell battery. We have set this system up to provide 24 to 48 hours of electrical power to run Emmett’s medical equipment in the event of a power failure.

While looking at the last couple of pictures with Emmett, the one on the bridge with the water is Mill Lake. Then we flipped to the next one and I said, ‘Emmett, look! The Bridge at Mill Lake!’ and he corrected me. ‘No, grandpa. Bateman Park.’

And he was right! Smart kid.

October 2018

EMMETTism’s

October 8, 2018

If you are wondering what an EMMETTism is, then I’m guessing that you haven’t read this blog too often. Allow me to provide a definition. An EMMETTism is a phrase or comment from Emmett which makes us smile – possibly even laugh. Unfortunately we have forgotten several EMMETTism’s, but we have a few here to share with you. N.B., EMMETTism must be typed/written with the first six letters capitalized.

There’s nothing like freewheeling down a hill. This isn’t an EMMETTism – it’s just a little boy enjoying life!

Emmett loves having a bath. Not just because he loves being clean, because he is fanatical about being clean, but also because it is great physical exercise. One night, while having a bath, Emmett wanted his hair washed with his mommy’s shampoo rather than his baby shampoo. After the bath he was all excited to see himself in the mirror. When he did, he burst into tears. When finally calmed down the reason for the tears came out. Mommy’s shampoo bottle was orange. Emmett thought his hair would be orange.

Watching TV, videos, or YouTube is not something that Emmett gets to do very often. It is quite a treat, in fact. In early September Emmett had gotten the sniffles – which he probably caught from me – and was feeling a bit under the weather.  One afternoon he looked at his mom and told her that he needed a rest on bipap ‘and a little bit of veggie tales’. Alisha couldn’t pass up this request for video time.

As we’ve already indicated, Emmett is a clean fanatic. So much so that if someone else plays with his toys he will ask if they’ve been sanitized before he will play with them. He’s never liked touching sand or doing finger painting – although we’ve been doing that. It’s sort of like Star Trek – You know, the one that goes ‘Dirt. The messy stuff on your fingers. These are the adventures of Emmett, his mission, to explore dirt and actually get it on his fingers without crying’. *You have to say that with the music of the Star Trek theme playing in your head. Well, just last week Emmett wasn’t letting Alisha brush his teeth. They had just been at the dentist and he loved it (they were at Allwood Dental, a new clinic with awesome staff and a cool TV setup that moves up over your head so you can watch without interruption), so to get his teeth brushed Alisha told him they were playing pretend. That she was the dentist and he was her patient. Emmett looked at her and said “You a dentist, mommy? Well, where’s your TV????”

Emmett loves Toy Story. It is literally his favourite. He gets to watch the DVD while driving to and from BC’s Children’s Hospital – which will be happening on October 9 (today) as he is heading in for a bunch of assessments and tests – and he does know the story inside and out. He has miniature Toy Story characters that he loves playing with. At almost any time, he can tell you exactly where in the house his Toy Story tupperware container is so that you can find his toys. In the video the toys are only animated when the ‘humans’ are not around and that includes the boy Andy that the toys belong to, so when the ‘humans’ are around they stop and drop. One of Emmett’s favourite things is shouting “Andy’s coming”! When Emmett does that, you have to stop, fall over and be still.

A less challenging command from Emmett is that he will shout “Family Hug!” and Josh, Alisha, and Wendell (the cat) have to stop everything and immediately join with Emmett in a giant bear hug.

Of course, there are the longstanding favourites. Carrots. Emmett loves carrots. It will be fantastic when the time comes that Emmett can eat food by mouth versus his tube feedings. We are all, however, quite worried that when he finally tastes carrots that he may be somewhat disappointed! Of course, they will always be orange. His favourite animal is most certainly still the Hippo. And based upon the picture book he knows that Hippos hiccup and giraffe’s laugh. And he still loves orange hippos. We actually found some orange hippos on Amazon and ordered them. They never arrived. After some emails, the seller re-sent the order. And it never arrived. We were quite disappointed but four months later both orders arrived – we now have lots of orange hippos.

While camping this summer we were out for a stroll with Emmett. (I like stroll better than walk. Obviously, Emmett doesn’t walk. In his power chair he rolls. And stroll has roll in it – so I think it’s fitting and inclusive to say we were out for a stroll). As we went around Emmett observed everything from the bugs to the RVs to the other people out for a stroll. He meanders. He does circles. He is a typical three year old. But as we came up to a small parking lot his irregular path suddenly straightened and he went like an arrow straight towards a beautifully restored classic Dodge muscle car. He stopped right at it and rotated his chair to look at us. Then he exclaimed, “This is me!” The car – a brilliant orange.

As a three and a half year old Emmett obviously has an early bedtime. Couple that age with SMA and that early bedtime is an absolute necessity as he is exhausted at the end of the day. This led to the next EMMETTism which occurred while camping during the fall. All spring and summer Emmett has been going to bed while the sun has still been up high and bright. Sitting beside the campfire as darkness settled in, Emmett was enjoying the sights and sounds of the campfire. He loved watching others roast marshmallows and enjoyed squishing his own right out of the bag marshmallow. Out of the blue – or rather out of the dark – he exclaimed, “Look! Dots!” as he starred up at the night sky! It has been months since he saw stars and his words failed him. So dots it was!

After reading the book the Blue Hippo, in which a real hippo turns into a toy hippo on wheels so he can be close to the little human girl that he loves and then after being forgotten when the girl grows up, becomes the girl’s little baby boy, Emmett has decided that he wants an orange hippo on wheels for Christmas, that his mommy wants a blue hippo on wheels, and his daddy wants a green hippo on wheels.

Christmas is important for Emmett year round. It was a disaster for Emmett when he lost his playmobile Santa figurine. Fortunately, his grandma Rhonda found one in a thrift store. Hurray! After his fishing excursion with his daddy, Emmett has also added an orange fishing rod to his Christmas wish list!

Emmett’s Favourite Jokes: These are pretty corny and remember they come from a three year old.

Why does Santa have three gardens – So he can hoe, hoe, hoe!

Why does the cow cross the road? To get to the moooooo-vies.

Why did the banana have to go to the doctor? He wasn’t ‘peeling’ well!

Finally, Emmett will always try to prolong play time, story time, or anytime that he is having fun with the phrase “Just a couple more minutes”.  Not two minutes. Or five. And if you say two more minutes that is absolutely wrong. It has to be a couple more MINUTES! And yes, he will start to shout minutes if you don’t agree with him right away.

The blog is finished, but if you have a couple of more minutes, Emmett has finished all of his check-ups at the Children’s Hospital today. His neurologist told him and his parents that Emmett, who has SMA Type 1, now presents as having SMA Type 2. We have felt that for a while, but now it’s official. This is a pretty big Spinraza moment for us. This drug is literally a miraculous and life changing five millilitres that Emmett gets every four months. WOW!

October 10, 2018

Definitions of Spinal Muscular Atrophy Types 

What is SMA 1, 2, 3, and 4. And Type 0!

In the last blog post we made a huge proclamation, that Emmett has progressed to presenting as a toddler with Spinal Muscular Atrophy Type 2 versus Type 1. However, I did not go into details nor did I provide any definitions. My friend, Sharon, commented that I made her do some research to figure out what was the difference, so here is a recap. *Please note that the descriptions of Emmett that follow are going back in time.

Layperson definition of the Types of Spinal Muscular Atrophy – PRIOR to SPINRAZA:

Spinal Muscular Atrophy describes the group of diseases in which a progressive degeneration of the spinal nerves causes a wasting of the muscles they control. 1 in 50 people are carriers of the survival motor neuron 1 gene, which decreases survival motor neuron protein, and this decrease causes the destruction of the nerves in the spinal cord that control neuromuscular growth and function. Carriers experience no symptons. Carriers do not develop the disease. When two carriers have a child, there is a 1 in 4 chance their child will have SMA. It can vary in severity.

SMA type 1 – most severe and the life expectancy is incredibly short. There are some amazing exceptions. Infants identified immediately upon birth may be referred to as SMA type 0.
SMA type 2 – children have greater SMN protein but still have a shortened lifespan and can never stand independently.
SMA type 3 – children have a normal lifespan but have life-long physical disabilities.
SMA type 4 – adult onset.

Prior to the drug Sprinraza there was No Treatment. Parents were told to love their little ones, provide them with as many experiences of life as they could,  but realize that respite care was the only available care. Emmett was born in 2015 and he was involved in a worldwide trial of the drug that involved 124 little ones around the world. 2/3 of the little ones got the drug/1/3 of them got the placebo. The kids and families on the placebo were promised the drug after the test if the drug proved successful. The drug was amazing – the kids receiving the drug were improving. The kids on the placebo were literally dying. The company ended the test early, pushed for early approval of the drug from the USA FDA, Health Canada, etc.

At about three months of age Emmett lost the ability to move his legs. He never developed the ability to hold up his own head. His grip was weak and his wrists curled. He was a stomach breather. He was an incredibly floppy baby. And he was incredibly cute!

On August 18, 2015 Emmett was diagnosed with Spinal Muscular Atrophy, Type 1. By late September his alert eyes were rapidly looking about but his side to side head movement was virtually non-existent. He was losing the ability to control his muscles very quickly – with both arms failing to respond by the end of September 2015. Literally one day he could reach out and grab the ribbon from his helium balloon and then the next day he could not. It was heart breaking and I swear that even at his young age, Emmett knew that something was wrong with him. In October – I believe it was October 7, 2015 – Emmett got his first injection. At that time the drug was known as SMNrx. The drug was later called Nusinersin and, when it came to market, was called Spinraza. He was in the blind trial so we did not officially know if he was receiving the drub or a placebo until almost two years later – unofficially we started seeing improvements rather rapidly. (Interesting fact: the company that developed the drug was called ISIS. They changed their company name to IONIS. The drug was later purchased by BIOGEN.

Here’s a blog post when Emmett turned one. The italics are a section copied from that post or you can click the link to read the entire post.

Take a look at Emmett when he was 12 months old.

“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.

November 2018

Toy Story

November 8, 2018

In case you didn’t realize it, Emmett loves Toy Story. Woody the Cowboy and Buzz Lightyear have been his favourite companions for more than half of his life. This summer when Alisha and Josh started talking about making the move from his crib to a big boy bed there was only one request on Emmett’s part. This his big boy bed be a Toy Story bed! Well, fortunately Emmett wasn’t talking about a bed that looked like Bullseye’s corral or Buzz’s space ship. He was fairly open ended on his expectations. Josh and Alisha, however, had a bigger challenge than Toy Story. They had to figure out what to do? You see, a regular big boy bed from any furniture store would mean instant aching backs for any adult supporting Emmett. A hospital bed would provide height and adjustability but is so institutional. So Josh went to Google and started researching bed construction and came up with a plan that had the bed high enough that adults don’t have to bend over to work with Emmett. It is still a project in progress as the drawers still need to be built (picture a captain’s bed on steroids) and then it will be all set.

So you may be wondering, how is a captain’s bed on steroids a Toy Story bed! Well, because it has Toy Story Sheets and a Toy Story comforter. That is everything that Emmett needs to make his big boy bed the best thing ever. Of course, Woody and Buzz pyjamas are also very important for this character bed. Is he happy with his Toy Story bed? One look at his eyes in the above photo should answer that.

Halloween was either going to be Woody the Cowboy or Buzz. The week before Emmett finalized his decision. He was absolutely and without hesitation going for his second year as Woody. Buzz is a fun costume to dress up as, but Woody is the real thing. Emmett dressed as Woody on Sunday, Buzz on Monday, and then Woody on both Tuesday and Wednesday. Emmett had to go out on Halloween in his specially adapted stroller because his power chair was in the shop for repairs. Fortunately, it was back in service before the week was up and Emmett had his independence again.

Emmett got to go out to a pumpkin patch and was overwhelmed by the range of pumpkins that he found. He selected a great pumpkin and then announced that he wanted it carved like a hippopotamus. If you know Emmett at all, then you know that hippos are absolutely another very important facet of Emmett’s life. So we got out our pumpkin carving gear and Emmett got what we think was a pretty good hippo pumpkin.

Of course, with some trick or treating it was once again an opportunity to discuss with folks the fact that Emmett doesn’t eat or drink anything by mouth. So candies and chocolate bars are like toys for him. Something to play with but not to eat. Smarties boxes are still a favourite because they make great musical instruments. A huge thanks to all of the neighbours who helped make Emmett’s evening a great one. And the helium balloon and toys you specifically selected for Emmett certainly allowed him to really celebrate.

Emmett has been back to the Vancouver Zoo – it really is one of his favourite places. The hippos were busy lying in a mud puddle and enjoying the fall sunshine. The wolf was meandering around the enclosed habitat. The grizzly bear was right up at the fence and seemed to take an extremely close interest in Emmett … maybe Emmett’s wheelchair … no, I think it was Emmett. That grizzly tracked us for a while – we were all glad that there was a significant fence between us and even more to leave that area. We were able to get up really close to the moose, saw lots of flamingos, and were able to see the lions sleeping. The lions always seem to be sleeping! All in all, it was a great trip.

Alisha and Josh recently received word that they won an awesome mobility bike designed for 4 to 8 year olds. Another child had outgrown the bike and the family graciously allowed Canuck Place to have a draw for it – and Emmett was the lucky recipient. This bike’s awesome three wheel design was intended from the beginning to meet the needs of individuals who simply could not ride a regular bike. And it means that Emmett has another very safe means of moving about and feeling like other kids. It comes complete with a full safety harness to hold him into the very secure high back seat and foot pedals/straps it allows him to feel part of the bike. Even better, the adult can steer and brake the bike while using the push bar at the back of the bike. Emmett doesn’t have a helmet on in this video clip, but believe us when we say that a helmet will be a mandatory part of his safety gear. (Augghhh! His head is too big for a toddlers “CARS” bicycle helmet. It doesn’t appear to come in larger sizes. And yes, subversive grandpa that I am, I’m trying to push him from one of my favourite movies, Toy Story, to another of my favourite movies, CARS!)

Emmett’s new bike is another great form of exercise for his legs. You see, Emmett’s brain messages are gradually getting through to his limbs and, you may recall, Emmett’s legs stopped responding when he was about three months of age. Please note that Emmett is not powering this bike in this video – Alisha is pushing it and the direct drive wheels of this Freedom Concepts bike mean that the pedals turn in conjunction with the wheels. This in turn exercises Emmett’s legs. We hope and pray that in a future post we can exclaim that Emmett is powering himself! Those legs of his just aren’t strong enough yet. In water his legs have been quite active for a long time – as the water reduces the impact gravity has upon him. His bathtub is filled to the top daily for a physical outlet as Emmett floats, swims, and kicks his legs. Alisha exercises his legs multiple times a day. During his quiet time he is in his ‘legzerciser 2018’ for about 1.5 hours daily getting more movement happening. The legzerciser is a homemade device that gets Emmett’s legs up in the air where he can freely move them about. Recently while working out with his mom during stretching exercises, he pointed to his left leg which, when mom puts it into an upright position that he can hold upright and vertical for a few minutes, he said “This leg is perfect!”. Then he looked and pointed at his right leg, which he cannot hold up nearly as long, and pointed out that “This leg is not perfect”. Alisha certainly assured him that she loves everything about him and especially both of his legs. The bottom line: Emmett has always known that his body is different than other kids and, even at his young age, that he is unique.

There are so many joys with Emmett and we love sharing those with you. There are also challenges. For instance, Emmett is currently on his second wheelchair. While he has been involved in a mobility study with power chairs since he was 16 months old with chairs that have been provided for him to use, his next chair will be ‘his’ chair. This is both awesome and a challenge, as a power chair can cost as much as and probably more than many families would spend on a car. The basic cost of the chair for Emmett will be provided but extras – which will be very important for Emmett to have – are the responsibility of the family. We mentioned that his chair was in for some work – the technician indicated that this chair (second hand when Emmett got it) is nearing the end of it’s serviceable life.

Another challenge is public accessibility. This includes our church. When it is not cold and flu season – which does seem to be most of the year – Emmett loves getting out. He really enjoyed being at Church VBS this year. The main floor is accessible and all of the activities that Emmett’s age group was involved with took place in the sanctuary, the foyer, and outside. The congregation is looking at the challenge of how to provide accessibility for Emmett and others who require it, but for a building with three levels it is not going to be an easy task. Yet it is an important task to allow Emmett independence and the opportunity to participate. At least, participate when it isn’t cold and flu season.

Of course, their house does not have a handicapped washroom. That is something that will have to be in future plans. Right now, Emmett has just finished getting another dose of Spinraza. I think that this might have been injection number 13. This took place on Wednesday, November 7th Emmett at BC Children’s Hospital – another injection of Spinraza. Another lumbar puncture, to be exact, which is certainly far more invasive than just an injection. The neurologist removes 5 ml of spinal fluid and replaces it with 5 ml of fluid containing the drug Spinraza. Emmett was not looking forward to this. As much as he loves being at the hospital, he recognizes the tests and process that takes place before this procedure. Which he obviously does not like. It went very well and Emmett handled it like a champ. This was a huge relief for Alisha and Josh – because he was very upset in July for his last lumbar puncture. 

There have been three or four trips to Vancouver over the last two weeks. Check-ups, getting fitted for new orthotics, getting his body brace adjusted, and of course his lumbar puncture for Spinraza. This little boy has a very full calendar. This little boy is growing so much. He is a tall boy and my goodness he is getting heavy!

Your thoughts, best wishes, and prayers for Emmett are truly appreciated. Emmett is such a happy little boy. Thank you for loving him with us! He is incredibly special.

December 2018

Emmett loves December for one reason. Santa Claus.

December 8, 2018

Yes, Emmett knows that his daddy is a minister and that he works at a Church. Yes, Emmett knows about the baby Jesus and he always checks the nativity scenes to ensure that the baby Jesus is there. He has lots of fun playing with his Playmobil Nativity Scene and the baby Jesus can do miraculous things. But … Santa Claus … well, sorry but in Emmett’s eyes even grandparents take a back seat to Santa Claus. Ho Ho Ho!

We do not know why Santa plays such a huge part of Emmett’s life view. It certainly didn’t stem from a family gathering a few years ago when Josh dressed up as Santa and Emmett was absolutely terrified. There was no love for Santa at that point but it has been a developing story every since. You may recall that we mentioned in the summer that there was great wailing and grief in the Willms’ home when Emmett’s Playmobil Santa was lost. And then great joy when Grandma Willms found one in a toy store at almost the same time that Alisha found the missing Santa at home. (We are blaming Wendell the cat for hauling Santa away!) But now there are two Santas!

Last year before Christmas, in the early fall, and well just about anytime of the year Emmett would look up at the night sky, full of stars, and go “Ho! Ho! Ho!” and search for Santa and his sleigh. He never saw them. This year we haven’t heard the “Ho! Ho! Ho!” for a while. But last week, the first week of December, he looked up at the night sky which was a mix of stars and clouds and whispered “Ho! Ho! Ho!” Emmett hasn’t seen Santa and his sleigh in the night sky, but he certainly has the real spirit of Christmas.

Last year Emmett was ill around Christmas and missed out on an opportunity to meet Santa and go for a plane ride with him. When Canuck Place in Vancouver announced that it was happening again, Alisha and Josh were very quick to get Emmett’s name into the draw so that he might have the opportunity for two of his favourite things. Santa and planes. Because planes are right up there as special things for Emmett and, apart from an emergency air ambulance flight, he has never been in a plane. Nor met a real Santa (because it doesn’t seem that his dad dressed up as Santa was very satisfying. The photo at the very top is one of Emmett’s many expressions as he was on his one hour plane ride that flew from Vancouver over the mountains to Whistler and then circled back. He loved it and even with the elevation changes his ears didn’t even bother him. Think about it, how do you tell a three year old who cannot swallow to swallow and reduce pressure on his ears! He does do a good job of yawning so that was an alternative. The scenery was absolutely fantastic.

Click here for a link to CTV’s coverage of the Canuck Place and Air Canada Special Santa Flight. Emmett has a cameo in it.

CBC News has given us permission to share their coverage of the Special Santa Flight. They interview Charlie and her mom. This is the same Charlie that hosts the 10K walk, run, and roll to end SMA. There are also several more clips with Emmett visible!

https://youtu.be/h_7Nylz-urU?si=nkPDDEOd6eBhAiz7

Well, this trip was even more than Emmett was ready for but there was one huge flaw! As the family headed out of the house for this outing, Emmett had a huge fuss and tons of tears. There was no way that he was getting into his van. After all, Santa was coming to get him and pick him up with a plane! Right! LOL – eventually he calmed down and they were on there way to the Vancouver airport. After a lengthy wait, Santa appeared – with his upper body revealed through a roof top opening in the Dash 8 airplane. “I’m here, Santa! I’m here, Santa!” Emmett shouted! While he’s getting louder, Emmett’s shout is not too much above most kids inside voice. Even so, Santa heard him. We think. When Santa arrived in the building, Emmett was so excited about Santa that he was hyper-ventilating. Alisha and Josh first went into a minor panic and medical support roles as they weren’t sure what was happening at first, then worried that if he didn’t settle down that he’d have to miss the flight, and then as Emmett calmed down a bit they realized he was literally just so excited that he couldn’t breathe for a few moments. Once he got his second wind, he grabbed his power chairs joystick and went charging off towards Santa – who was on the other side of the room. In process he almost plowed over a couple of other kids in wheelchairs (Canuck Place is a hospice for medically fragile little ones – running over them in a power chair would not have been ideal) because he had to get to Santa.

December hasn’t all been Santa. There was an evening opportunity to visit Canuck Place – Abbotsford and to see a bunch of critters up close. If you look on his chair’s arm rest you’ll see a Tarantula that was crawling about and visiting him. The evening included a wide range of animals like snakes, turtles, rabbits, and other long legged bugs. Emmett also got a trip to Home Hardware to check out their offerings. The face mask is just in case anyone in the immediate vicinity has a cough or bug that we don’t want Emmett to catch.

Emmett’s Hippos have been left in the house now that December has arrived. Santa, Rudolph, and Frosty are his friends that are accompanying him on his outdoor excursions right now. And even though it is getting chilly out, Emmett is still out and about on his bike. He just upgraded it with a carrying rack that is mounted on the back and can hold his suction machine, food pump, and anything else that he needs to haul around with him.

We will say Merry Christmas and Happy Holidays now

but we’re pretty sure we’ll have another blog posting before the New Year.

It’s a Secret!

Saturday, December 15, 2018

Emmett and I have a secret. We have been planning this for a while. In fact, Emmett told you about it in his blog last summer. After reading the story The Blue Hippopotamus Emmett decided that he wanted to give his mommy a blue hippo on wheels and his daddy a green hippo on wheels. Well, that is our secret project that we are working on. If you see Alisha or Josh, please do not tell them about this blog post or the secret that we are working on. They don’t know. If they have been in the room where we have been working on our hippos on wheels, then we either cover them up really quickly OR we tell them to not look OR we tell them to cover their eyes. And so far it is working. We are sure that they don’t know about it.

Daddy has been really good about it and he doesn’t ask BUT Mommy is always asking what the secret project is. Silly Mommy! But Emmett won’t tell her what the present is. And it was very funny because when she was coming close one afternoon, Emmett gave her the best ‘what are you doing glare!” It was quite funny.

First though, a video of Emmett playing with his zoo:

Merry Christmas, Everyone!

Emmett’s Fourth Christmas

Friday, December 21, 2018

Merry Christmas!

Emmett is looking forward to this Christmas! There will be family gatherings happening from Christmas right into January. His Aunt and Uncle and cousin from Alberta have flown in for the holidays. Shortly after New Year’s his Aunt and Uncle from Australia will be here for a visit. Emmett is ready and waiting for everyone to get here. Here is a look at Emmett and his first four Christmases. We think this look back over the past four seasons is incredible!

2015: At Emmett’s first Christmas we had a very happy little boy. His eyes were always dancing and observed everything (and his eyes haven’t change!). His movement was very limited but, as he was receiving an experimental drug, we saw signs of improvement. Emmett had to be horizontal or significantly reclined or he would choke on his own saliva.  He could not hold up his own head. In fact, turning it from side to side was a challenge. He had no leg movement but, after losing arm movement earlier in the year, he now had regained limited arm movement.

2016: Christmas saw Emmett continue to progress. His neck strength had improved and with some neck support he could hold his head, turn from side to side. Earlier in the year he had gotten his first power chair and, after a few days of doing circles, he had mastered getting to places that he wanted to go. The joystick on this first chair was so sensitive that he could direct it with one finger – his strength was so limited that he required that sensitivity. Emmett was getting some vertical time in a standing frame and, as you can see in the photo, was pulling his head off of the head rest.

2017: With the support of a back brace, at his third Christmas Emmett was able to sit in toddler seats. He has great control of his head most of the time. His arm movement continues to improve and he is starting to demonstrate leg movement while out of water (in water he has been showing leg movement for a while now). His power chair was upgraded to a larger child sized one with a less sensitive joystick – as he was now breaking the original joystick.

Christmas 2018. There is no back brace!

Emmett, when helped up, is sitting on his own. After his forward facing plane ride with Santa earlier this month, Emmett has been upgraded in his van from his rear facing car seat to a forward facing car seat. Along with his big boy bed, this really makes him feel like a big boy. On long trips Emmett will still be horizontal (in a special harness designed to keep him safe and secure) but he handles car seat trips incredibly well. 15 minute trips that in December 2017 required frequent suctioning now are completed with no suctioning at all. While he still requires full support while being picked up, Emmett will fuss loudly if he isn’t held so that he can hold his own head and look around. And for the third year in a row, his power chair joystick has been upgraded to a less sensitive model. 

And because four pictures are not enough, here are a few more!