Merry Christmas and a Happy New Year!
Emmett, Alisha, and Josh want to wish you a Happy New Year. Thank you for reading our blog. Thank you for your prayers, interest, and positive thoughts. This little boy has grown so much this past year. In fact, his Orange Hippos T-shirt is now too small but in August it was too big! That is why Emmett is in a big boy bed and, in fact, is even starting toilet training. This is facilitated by an awesome toilet seat setup which will hopefully reduce back strain - for his mom and dad - not Emmett.
Emmett made Hippos on Wheels for many family members as Christmas presents. He loved giving them out - especially his parents. He shrieked 'Mommy' and 'Daddy' when he gave them their hippos! While Emmett still hates getting dirty, his grandpa somehow got paint all over Emmett's face. Grandma Pam showed him what he looked like in a mirror. He loved it and left the paint on until his bath!
Emmett got to visit with his great-grandma Willms. Family time is so important!
There was no snow on Christmas Day so it was perfect to go out for a roll and walk to get some pictures!
Emmett has become a fussy little boy when it comes to hats. This year he has not wanted his ears to be covered up. Obviously, that causes some concern in cold weather so Grandma came to the rescue with an 'awesome sauce' hat that he allows over his ears. It had matching mittens with a flip opening for his fingers. This is important as he uses his right hand on the joystick and his left hand to change the speed levels. His driving is rather scary when he doesn't have a good grasp on the joystick.
Opening presents was quite a workout. He's got pretty good arm movement but ripping paper still is a lot of hard work for Emmett. In the video you can see how he's turning pages in books. Emmett loves stories! In the video you'll hear Emmett calling out 'Look, Po!' a couple of times - we should explain that Po is his giant stuffed Hippopotamus. This boy has a vivid imagination.
You've seen Emmett pull Po around in his little red wagon. This time Po rode on the back of the power chair. This was also the first time that Emmett has allowed Po to come over to grandma and grandpas.
On New Year's eve Emmett stayed up until the clock hit 9 o'clock. He enjoyed playing KerPlunk and Hungry Hippos!
2018 has ended. 2019 has started. We are looking forward to what is ahead. What we can tell you is that the drug Spinraza (also known as Nusinersen) has changed Emmett's life. The changes are still happening.
It has been quite a year for Emmett. Here's a quick recap.
January - 2018 started off well and, with his back brace on he was sitting up by himself.
- but on January 26, 2018 he was admitted to BC Children's hospital, into ICU the next day and was diagnosed with RSV. We cannot describe how seriously this affected Emmett and all around him. And remind you again, if you're ill please ensure that you don't spread your illness with medically fragile (well, honestly, don't share it with anyone!) He was intubated. He was heavily sedated for several days. He had more tubes inserted into his little body than we could count. It was terrifying. The original blog posts left out so much of the terror we felt. It was too much to share.
February - it was a total of two agonizing weeks that Emmett was in the ICU and on February 9 Emmett was discharged. He bounced back so quickly! Phew.
March - his third birthday and a special ride on a BC Transit bus!
April - "Read a book. Please!" and "What's That!" seem to be his favourite phrases
May - Emmett's power chair had it's speed limits upgraded. Can he ever go fast now!
June - We introduced you to The Orange Hippos! And Emmett went camping! He got to try out a standing walker - which he sort of liked but it hurt his pen... hmmm, can we type that word on a family blog? (he still doesn't have a permanent standing walker. Maybe in 2019!)
July - Emmett watched the CARS video for the first time. He really wanted to watch Toy Story again! And more outdoor excursions.
August - The Orange Hippos participated in Florence and Charlie's 10K to End SMA. Emmett's team, The Orange Hippos, was identified as the team that raised the most funds! Thanks to all of you for your generosity.
September - Emmett went fishing. During tummy time when he was lifted up he HELD UP HIS OWN HEAD! Such a huge accomplishment!
October - Emmett has SMA Type 1 but in October his neurologist told him and his parents that Emmett was now presenting like a child with SMA Type 2. This is a huge improvement. The drug Spinraza is the first approved medical treatment for SMA and IT WORKS WONDERS!
November - Emmett got his Toy Story big boys bed! And he won a second hand Freedom Concepts three wheeled bike specially designed for children with physical needs. It's awesome.
December - Emmett got to go on a plane ride with Santa Claus. This was organized by the very amazing Canuck Place! Last January we told you how Emmett was sitting up with a back brace. Well, now when he is put in a sitting position he can sit up without a back brace. Plus, during tummy time he held his head up on his own to watch Daniel Tiger. THAT'S ANOTHER FIRST! Who knows what will be next!
Oh yes, Emmett loves telling jokes!
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!
A huge thank you to OSM Websites. They have been a tremendous help from the very beginning of this blog. They have donated their time and expertise to host emmetts-journey.com and ensure that it runs smoothly for all of us. To everyone at OSM Websites, we wish you a Merry Christmas and a Happy New Year!
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:
And maybe a little bit of music therapy while at Canuck Place in Abbotsford!
Then it was time for both of us to have a nap! We'd been working very hard!
Merry Christmas, Everyone!
Emmett loves December for one reason. Santa Claus.
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!
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.