Today's Blog post is simply a video. Emmett would like to share with you Mo Willems book "The Pigeon Has To Go To School".
ICE CREAM FACE!
Is there anything better than a four year old kid (almost five, mind you!) with their face covered with ice cream? Well, yes, there honestly is. It's a four year old whose face is covered with ice cream that we never thought would get to taste, let alone eat, ice cream! Not to mention use his own arms and hands to get the spoon of ice cream from the bowl to his face ... and then into his mouth! In fact, Pam had to go searching for kids' spoons as all we had in the kitchen were adult sized utensils. What can we say about this miracle drug called Spinraza except that it works! It has never been touted as a cure. It is not a cure. But not only does it stop the disease, in Emmett's case it has absolutely been rejuvenating the spinal pathways carrying messages from his brain to his muscles. When Emmett started the blind drug trial over four years ago, no one would say for sure what the outcome would be. Certainly the hope was that it would slow down if not stop the disease. Look at Emmett. We have seen babies that have received the same diagnosis but started Sprinraza pre-symptomatically develop seemingly challenge free. With Emmett the disease, SMA Type 1, has been stopped from encroaching upon his capabilities and the REVERSAL of some of the affects of the disease. It is not a cure, but it is a miracle drug. If only British Columbia would make this drug - and yes, it is very expensive - more accessible to the children and young adults whose lives would be changed. Now back to ice cream!
Emmett is still very much fed by a tube that goes directly into his stomach. But for the last six or so months he has been taking small sips of water - and when we say small that is very much what we mean. One milliLitre of water. You see, since he was six months old he has been tube fed as he was not swallowing properly. The risk of him aspirating on food and even his own saliva has been huge. When he was about 6 months old, after a swallow study showed food not being swallowed properly, Emmett was weaned from breast feeding and immediately fed by tube. For over four years he has had no food or liquid by mouth, until recently. His medical team has given the go ahead so he, supervised by Alisha and Josh, is experimenting with food by mouth. And it is both fun and exciting and somewhat nerve wracking!
What you cannot appreciate is the joy that Emmett is experiencing. Photos simply cannot express his emotions. You see, while Emmett has to the best of his memory never eaten by mouth, he loves food. At meal times he is always at the table and part of the action. He has play food and dishes and utensils. He has Melissa and Doug - now I am not being paid to say this but Melissa and Doug stuff is awesome! - pizza set, lettuce set, pots and pans, and more things than I can remember. Suffice it to say, this little boy loves food. And not only playing with it. He has always enjoyed the aroma of what those around him are eating but, until recently, wasn't even interested in tasting it. That has changed now and, while he loves ice cream, he thinks that everything from apples to hot dogs to licorice to pickles taste great. And ice cream! Well, need we say more. *Note: the food given to Emmett is in minute amounts and pureed. When he tastes something it is large with no risk of him swallowing it, plus he knows very well to taste and then it's back out of his mouth. The only thing he swallows is either liquid or pureed.
Emmett loves to play and he can focus upon an activity far longer than any of the adults who are playing with him. With Emmett it is very much directed play, as in he will direct his play partner on what they need to do as part of the play. If he is playing with small toys on a table or tray or on the floor, then he can amuse himself for lengthy periods of time. Of course, if he knows that someone is nearby then he quickly will envelope you into his play. And direct you. By direct I don't mean just telling you which toys to get from the toy box to play with. He will tell you how to play with the toys. For example, recently Emmett and I went on a walk/roll with many of his favourite stuffies being pulled along in a wagon behind his power chair. Winnie the Pooh was along on this journey (Winnie has been a mainstay of our treks for over a year) and, as to be expected, Winnie the Pooh was hungry and was searching for a honey tree. In his local park (Emmett refers to it as Emmett's Park). Emmett/Pooh found the tree with honey and then I carried Pooh to the tree and put him up as high as possible. Then behind me Emmett started making a humming/buzzing sound and I wondered if something was wrong with his breathing. I was only a few steps away but I quickly turned and
headed back, only for Emmett to exhort me to get back to the tree.
"Grandpa, it's the bees! The bees are coming!"
Grabbing Pooh, I now understood that the buzzing sound coming from Emmett was actually Emmett making the sound of buzzing bees, and with that knowledge we quickly left that area of the park. We did not want to get stung, after all. The bees did come after Pooh and us several more times but we managed to evade getting stung! Probably because it is February and there are not many bees out. They were imaginary.
Another area of play that we are experimenting with is remote controlled toys. For Christmas he got a remote controlled excavator. It has a lot of buttons but Emmett is starting to figure out how to use this toy. Don't tell him, but for his birthday on March 9 Emmett is going to get a remote controlled dump truck to go with the excavator. This way he can control his own play with toys that are otherwise too big and challenging for him to play with otherwise. Yet every little boy should have an excavator and a dump truck that they can play with. This move to remote controlled toys is an experiment that is worth taking and hopefully he has fun. Of course, while Emmett has stopped marking up the walls with his power chair, this new venture with somewhat large and powerful remote control toys has already left some scars on the drywall. Oops! Sorry Alisha and Josh!
Alisha, Josh, and Emmett are really excited about some upcoming changes. After a lot of talk, planning, and saving they are getting ready to demolish their bathroom and create a more accessible bathroom for Emmett. The floor space cannot change (without drastically impacting the house floor plan) but the layout of the room can be significantly enhanced. First up, the doorway is going to be enlarged so that a wheelchair can enter without difficulty. A roll-in shower is going to be built which will allow Emmett, while in a shower chair (a non-powered chair able to get wet made by Rifton which they already have), to be rolled in without any issues. The room will be designed as a wet room so that no water damage can result. A toilet with a higher seat, similar to what many seniors have in their bathroom, will be put in. A deep soaker tub will be installed where the current tub is - Emmett still does a lot of physio in the tub. Of course, there is going to be a sink also - the aim is for a wheelchair accessible sink that will have adjustable height levels.
The next change is that after going through two loaner power chairs, Emmett is going to be getting his own power chair. The biggest challenge of this is that, like the bathroom, it is expensive. And before you ask, yes the basic power chair is covered under provincial plans. But nothing optional is. You're probably wondering why Emmett needs options; why can't we/he be satisfied with the basic chair. Here is one example that will cost in the thousands of dollars extra. That is a seat that raises and lowers - so that Emmett can participate fully with activities that occur around him, such as joining people at the dinner table at an appropriate height rather than having his eye level below the table top. An option like this is not included in the provincial coverage.
Emmett is excited to announce that he is registered for kindergarten next year (See The Pigeon Has to Go to School). On family outings he often goes for a roll/walk to the local neighbourhood school that he will be attending. Everyone is very excited about this. Everyone is nervous about this. Meetings with the school staff have been very encouraging. We are also very excited and happy that the City of Abbotsford is going to be installing accessible sidewalks on the corners between Emmett's house and the school. Emmett currently has to go to private driveways to safely access the road to cross the street when he's heading to the school or the local park, so this is a very positive change that will benefit the entire neighbourhood. In the pic just above, Emmett the vandal is trying to push over the stop sign that is currently right in the middle of the sidewalk. We're positive that this if going to be relocated also. Emmett loves the swing at his new school - although he still has a bit of growing to do.
While Spinal Muscular Atrophy is a rare genetic disease, every individual dealing with it is amazing. One of these is individuals is Kevan who has SMA Type 2. About four years ago, with a group of his friends, Kevan spent three weeks backpacking across Europe. Literally. His friends carried Kevan in a backpack he/his family/they created. The WeCarryKevan backpack is now a product that can be purchased commercially. Emmett is now the proud owner of a WeCarryKevan backpack. We are all looking forward to some amazing journey's into areas that a wheelchair simply cannot access. Stay tuned for more adventures!
Thank you all for your support, your caring, and your prayers. A huge thank you to everyone who donated to the bathroom fundraising campaign in the fall. You'll be able to see the finished product soon. And if you would like to make a financial contribution to this project, please visit the How You Can Help page for information on making a gift. Please be aware that as this gift is for an individual there are no tax receipts available.