If you didn't realize this already, I think that Emmett is extremely adorable. And smart. And cuddly! This past November in the beautiful Fraser Valley of British Columbia it has rained and rained and rained. Emmett's outside time has been severely curtailed. Yes, there is a giant poncho to cover up Emmett and his power chair but it is still not as great as awesome sunshine. The result - more reading time. "Book! Book! Book!" is Emmett's favourite phrase. And he got lots of reading time this past month. And reading time means cuddle time!
His speech is getting more and more recognizable. And like other toddlers he picks up on the most adorable things - or things that parents absolutely wish hadn't been heard. Recently we were all getting ready to go outside but I couldn't find his hat (it was packed in a container already in the van) so I put one of mine on him. Then perhaps I commented about him having a 'fat head'. It's quite possible someone else said that as it was a long time ago and I'm having trouble recalling the facts. At any rate, Emmett said 'Fat Head'. Someone laughed. I'm pretty sure it wasn't me. But that started it. The chant was even more pronounced than "Book. Book. Book." Except it was "Fat Head! Fat Head! Fat Head!" over and over again. He would finally stop but then if he saw me the chant would start up again. Sigh! I'm working hard to ensure that I don't teach him any more unique phrases.
Alisah, "Emmett, how old will you be in March?"
Emmett held up three fingers and exclaimed, "Three!"
"How old are you now was followed with a two and two fingers held up. We are so excited and happy for the speech and the finger control that Emmett has. We pray for more and more!
Emmett is also thrilled that it is Christmas time. His fascination with the Baby Jesus, in Nativity scenes, has carried over from previous Christmas seasons. However, we have to tell you that it is minor when compared to his desire to see "Ho!Ho!Ho!" who, according to Emmett, is visible every evening in the night sky. Emmett was supposed to have been on an excursion with Canuck Place in which Santa Claus was going to be a prime feature - but the cold that he has put a stop to that outing. Emmett loves his Christmas tree and checking out the ornaments. Wendell the cat also likes the Christmas tree and, believe it or not, also likes checking out the ornaments.
Why I don't sneeze into my elbow!
And cough too! If I have a tissue that I sneeze into that - obviously that's much preferred. Then I wash and disinfect often. This weekend Emmett is off limits to me. I have a cough. I cannot see him. We can talk on the phone. Maybe a video call. Just not in person. And all of us who care for Emmett sneeze/cough into our hands. You're probably thinking how uncivilized. Haven't we seen the videos and public health presentations about sneezing into your sleeve, the nook of your elbow, to reduce the spread of germs? And of course we have and we all taught ourselves to do that. But think about it - the nook of your elbow is EXACTLY where Emmett's head goes. Every time you pick him up! Every time. So we retrained ourselves back to sneezing into our hands. And then washing or using sanitizer. If that makes us uncivilized, then so be it.
Right now I'm teaching a group of grade two kids so there are a lot of coughs and germs rampant in the classroom. This teaching position sort of dropped into my lap and when it ends on December 22 then I will have more free time. Hopefully less coughing too. Because right now I do have a cold just like many of the seven year olds in this classroom. The teacher that I'm filling in for set up a washroom system whereby the child who heads out to the washroom puts either the girls' or the boys' sanitizer dispenser on their desk. That way you know who's at the washroom plus the kids know if the dispenser is on a desk, then they cannot go to the washroom. (Unless it's an emergency - please run out fast if it's an emergency.) And they've been taught to use it, in addition to washing their hands in the washroom. Some of the boys caught me using the girls' sanitizer dispenser on my hands yesterday. They laughed at me and I told them sanitizer is all the same. Of course, the dispenser is not - and I prefer using the girls' dispenser over the boys. Just because.
When I have a cold, not only do I miss seeing Emmett but I don't see Alisha or Josh. Were I to give my cold to them, then Emmett's main care givers have a serious challenge. They have to stay healthy. So I stay away, because I have a cold. Even when I didn't have a cold - just a few days ago - I did not go to see Emmett until I'd showered and changed clothes. And I would often wear a medical mask. You see, we're germophobic. At school where I'm working (and my entire career has been working in schools) it is not reasonable to expect that a child will not arrive without a cold - schools seem to be a hot bed for germs during some times of the year, thus we need to be germophobic.
In spite of that, Emmett has a cold. Not a hospital stay cold, but a cold that causes him to have more secretions than normal that then require more suctioning than normal and then more bi-pap time than normal. If it wasn't so worrisome, it would have been extremely cute when Emmett's voice went hoarse earlier this week. He actually was laughing at himself, because he thought his voice was hilarious. We had a nervous laugh - worried that this cute voice might result in something scary. Emmett has his voice back but this cold is still there. It's not bad. He's fighting the bug. And that in itself is amazing. Before this amazing drug called Spinraza, this little cold would have been much more challenging for Emmett and most likely would have meant a stay in the ICU. Even now, it is scary. His little lungs simply don't have the strength to handle a bad cold.
If you have a bad cold or some other potentially infectious ailment, steer clear of Emmett and his family. You're a risk that they cannot afford. In fact, steer clear of all medically fragile little ones. While you're at it, steer clear of medically fragile large ones, senior citizens, and ... well ... steer clear of everyone. I know, it's not always possible to steer clear of everyone. I was coughing at school yesterday. Into my hands. And washing them often and using sanitizer. So often, in fact, that the boys caught me using the girl's sanitizer container!
I sneeze into my hand - because Emmett's head is going to be cradled in the nook of my elbow.
This message has been approved by Emmett!
I love this photo that Alisha captured on her iPhone. The joy and excitement in Emmett's expression. The way that he's leaning forward. How his hand is gripping the joystick and urging the powerchair to go even faster. Clutching his stuffed hippo in the other hand as he drags it along on his journey. His costume - which I truly believe transports him to the Wild West where he is Woody the Cowboy on an adventure.
Every day in Emmett's life is an amazing adventure. Through this blog we have been sharing some of the heart highs and some of the lows. Emmett's love of life shines through everything. God has truly blessed us with this little boy. On the other hand, you already know that I do not view SMA Type 1 as a blessing.
On the ninth Emmett was 2 years and 8 months old. Right now he is at BC Children's hospital for assessments, tests, and then his lumbar puncture and injection of Spinraza, the super cool drug that is changing the way little ones with Spinal Muscular Atrophy live their lives. This will also be the first time that Emmett, Alisha, and Joshua have been able to see and appreciate the newly built wing - the Teck Acute Care Centre. This facility is, from all reports, simply above and beyond in what it offers to the little ones and their parents. We were amazed with the care and support at the old facilities, but this new building has windows, facilities to allow parents to be at their child's bedside in some comfort, and has bright, airy hallways. Simply wow!
Remember Emmett today and tomorrow. There will be all kinds of tests and assessments. Some are fun. Others are not. The lumbar puncture absolutely not. Yet Emmett looks forward to these visits. It makes me wonder if this little one remembers that, at six month of age before these lumbar punctures happened, he could barely move. What do little ones remember!
Praying for you, Emmett.
The Family Fall Festival - which in simple terms is Hallowe'en!
So how does a little boy who gets rather bashful about meeting new people handle Hallowe'en? Well, first he gets lots of practice driving through leaves. Then he dons the costume of his alter-ego. That is none other than "YEE-HAW!" - which is two year old talk for Woody the Cowboy from Toy Story. Then you go out to the Chilliwack Corn Maze with your church family to check out the animals and pumpkins. Alisha and Josh decided to avoid the actual corn maze simply because when they checked out the maze in early October they had great difficulty getting Emmett to leave and go home.
Then Emmett had a few trial runs in his Woody the Cowboy costume just to ensure that it would fit. And which hat he preferred to wear! This little man is very particular about his head wear and won't allow just anything on his head. The cowboy hat, however, was barely allowed to come off. Of course, in a huge gust of wind the hat was lifted from his head and went flying. I went to grab it and almost got it but the wind caught it again. At that point Alisha directed me to go back to my position with Emmett while she captured the wayward cowboy hat. And the costume and character was whole once again.
Then it was trick or treating time on the big day. The first house was prepped for him and book (5 little pumpkins) plus a stuffed Hippopotamus just made his day (yes, we were waiting for this moment!). The second house was some neighbours who always see Emmett out for walks. Emmett has been thrilled to see their display of pumpkins and ghosts on our weekly walk and, upon ringing their bell (well, we rang it because Emmett couldn't reach it) they popped out with an awesome helium balloon that was an awesome jack-o-lantern! (There were a few chocolates for Emmett's grandpa, too!) Next was Emmett's great-grandparents and grandparents. Emmett loves his great-grandparents place as there's an elevator and long hallways that he can race his chair down!
Finally it was back to his own neighbourhood and Woody the Cowboy was now completely into the groove. Up close to the door, get mom or dad to ring the bell, and then politely indicate that of all of the goodies available that his preference was a shaker. Now, normally a kid doesn't get to choose when they're out trick or treating, but that seems to be one advantage of being Woody the Cowboy (or maybe it's being a cute little kid wearing a Woody the Cowboy costume while in a wheelchair). You get a bit of preferential treatment while trick or treating. So Emmett got a ton of shakers! (Not really a ton, because he didn't even make it to a dozen houses). And at one house he got an awesome glow stick.
There was a sad moment when he dropped a shaker and then ran over it with his chair. As all of us have had our toes run over, we can tell you that the shaker didn't stand a chance. Emmett was quite distraught about that - until the next house and his shaker supply was replenished. So that's it until next Hallowe'en - oops, until next year's fall Festival. Are you wondering what a shaker is? Well, if you're a kid who cannot eat anything at all then you're creative - and SMARTIES are awesome Shakers! But is this really it until next year ... not when there are post Hallowe'en sales! To Infinity and Beyond!
Meanwhile, Emmett is busy helping out around the house. Need a garbage can to fill up with leaves? Emmett will get it for you! Does it have leaves in it already? Not a problem, Emmett will dump them out and spread them across the yard. Have a pile of leaves in the middle of your yard? Not for long if Emmett is around - he'll plow right through them and spread them everywhere. Such a happy little helper!
Of course, when it's over and time to stop the fun, then Emmett has a few thoughts. Fortunately, he is pretty good at going with the flow and moving on to the next task! Even though at the time he may not appreciate the change.
Are you trying to remember last Hallowe'en? Here's a glimpse back at 2016.