Daily/Weekly Thoughts
Daily/Weekly Thoughts

A Winter Video!

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Winter: It'll Be Over Soon!

Can you believe that it is almost the middle of February! Here in the Fraser Valley we can believe it because winter weather really didn't get here until February. Our almost springlike January is now a figment of our imagination as we have to deal with temperatures that have actually dipped down below freezing! Of course, the rest of Canada isn't feeling too sorry for us with our last minute winter. We cannot complain as this winter has been awesome - and for far more reasons than the temperate weather conditions. This winter has been one of really good health and we absolutely celebrate that. Plus Emmett is really enjoying the snow! So how upset can we be over a few snowflakes!

Every time of the year is disinfectant time, but even more during winter which could also be known as cold and flu season. Sneeze near Emmett and he will likely tell you to wash your hands. Cough and you'll be told to disinfect! This little boy knows that staying healthy is important and he follows the lead of his family. Alisha and Josh really appreciate how everyone who comes in contact with Emmett and themselves takes steps to ensure they all stay healthy!

Now back to winter, while some days have been miserable enough that Emmett stayed inside, others were so incredible that Emmett had to go outside and play. Somedays the snow was just a light covering, but there were also days when it was perfect sledding weather! And Emmett - decked out in the only hat that he allows to cover his ears - was out and taking full advantage of it. Mom and Dad also welcomed the opportunity to play in the snow rather than playing hours upon hours of Fisher-Price, Playmobil, RV, Winnie the Pooh, and doll house!

Emmett got to have four Christmases that went almost to the middle of January. For a three year old who loves everything about Christmas, this was absolutely fantastic. Of course, he also got to see family from all over. Aunt Jenny, Uncle Ben, and cousin Henry came to visit from Calgary. Aunt Katie and Uncle Josh were here visiting from Melbourne, Australia - apart from video chats they haven't seen Emmett in 2.5 years so that was a great reunion. Uncle Ben and pretty soon to be Aunt Alesha were around a lot. Of course, his grandma's and grandpa's were around to visit also. 

As you can imagine, four Christmases led to a great number of awesome presents. And Emmett probably got spoiled. He misses out on a bunch of other things in life, so a bit of spoiling here and there is okay. Playmobil camping toys, lego, clothes, stuffies, a doll, and I'm sure there is much more that I haven't listed. (BTW, If you are nearby and have a 3 D printer could you contact us? Cliff needs some custom AFO's (ankle and foot orthotics). Cliff is the doll that Emmett got for Christmas and he has wonderful hair! But a set of AFO's would be awesome. Let me know if you think you can help us out.)

Emmett has had a really good winter. We are happy to report that he has been healthy. His voice is getting stronger and stronger with his language becoming even more understandable. He is able to stick his tongue out now - something he could never do before. SMA not only affected his limbs, ability to swallow, and his breathing, it affected his facial expression and ability to control his tongue. Obviously that affected his speech so this chatterbox is becoming even more of a chatterbox. His imagination is incredible and he simply loves playing. He plays almost everything. The different voices that he gives his giant hippopotamus Po, along with Winnie the Pooh and friends, is fantastic. Emmett is also continuing to grow. He will be four next month and he is tall for his age plus has a solid build. As a result the homemade wheelchair that he has is gradually becoming less comfortable for him. Emmett's support team came to the rescue with a loaner mini-wheelchair which is absolutely incredible but, believe it or not, almost too small for him. This little boy is really not so little any more. Alisha really feels it as she is lifting him multiple times each day.

Adding to the back strain is that Emmett is having success (some days) at potty training. Some of you are likely saying isn't that late for a three year old while others are likely wondering how it is possible. Sure it may be a bit late, but considering the physical challenges that Emmett has sitting up it is understandable. He had to wait for the appropriate 'potty seat' that wouldn't wear out the care giver. Once again Emmett's team came up with a great solution. There aren't any photos although the other day Emmett, as he was sitting on the potty seat, ordered his mom to take a photo and post it on FaceBook! How does he even know about posting pictures on FaceBook! Smart kid! But there will not be any potty photos!

 

 

 

 

Next month Emmett will be turning four. He'll also be visiting BC Children's Hospital for another Lumbar Puncture and injection of Spinraza. The progress that we have seen over the last 3.5 years since Emmett began receiving this drug has been amazing. Thank you for your support, your calls and emails, your prayers and your best wishes. They help and are appreciated more than you can guess!

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Emmett's Christmas and Hightlights of 2018

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!

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Emmett's Fourth Christmas

 

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!

 

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!

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Guest Comment 4 months ago
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What a joyous journey through the years! Emmett has had many wonderful adventures in 2018. Can't wait to read what 2019 brings. Praying always for Emmett and for those who love him!
Guest Comment 4 months ago
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Forgot to sign my comment below about the 'joyous journey' through the years with Emmett at Christmas. We send many Christmas blessings to you all. Bob and Luella Meighen