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.
"Sure, Charlie Brown! I can tell you what Christmas is all about!" Linus van Pelt
At our Church Emmett was one of dozens of kids who answered questions about Christmas. Emmett was not in a talking mood and to several questions his response was "Ti Ti". This is his nonsensical response with no meaning that he is fond of giving, usually with a smirk, and especially when he just doesn't want to answer. Obviously, none of his 'Ti Ti" responses made it to the video but his final answer did. The question was 'what is the importance of Christmas' and what Emmett shared with the world was, "Lots of presents!" And this is so true. Emmett does like presents! What little kid who is honest would not say presents. However, limiting the importance of Christmas to presents would be vastly underestimating this little boy.
You see, for Emmett Christmas is so much more. Much more than presents! After all, Emmett is a hard core fanatic about Santa Claus. He adores Santa Claus. He talks about Santa Claus throughout the year! It could be a blistering hot summer evening and Emmett will look up into the night sky and exclaim, "Santa Claus!". It isn't that he is brainwashed into believing about Santa. Or that he is surrounded and overwhelmed from birth by Santa figurines. In fact, there are multiple Nativity Creche's in his grandparents' homes and in his own home. Emmett has his own Playmobil Nativity Creche. At his grandparents' houses he very reverentially picks up and looks at the baby Jesus before gently replacing the baby in the manger back in the proper spot in the stable with Mary and Joseph. The Baby Jesus in his PlayMobil creche is far more active and, one could even say, miraculous as it often flies about the stable. Lest we forget, his daddy is a pastor so, of course, Emmett knows the nativity story of the Baby Jesus.
Yet still, it is Santa that Emmett searches for in the night sky. When Emmett had the opportunity to participate for a second time in the Santa Flight hosted by Canuck Place and Air Canada, there was no question about it. Emmett was going. It was great fun - after about 10 minutes of flying on a typical B.C. overcast day, Emmett asked his parents when they would start flying! Ha ha ha. Santa was on the plane, and that was awesome for Emmett the Santa searcher. He has, in fact, actually asked his mom if Santa is real. Put on the spot, Alisha kindly and carefully discussed and chatted with Emmett about the concept of Santa. Mommy and Daddy bought the presents. Grandparents bought the presents. Santa Claus lives in all of us through the gift of giving. But there is no Santa. It was clarified. There was now no question about the reality of this jolly fellow. The facts are the facts. In his 4 years and 10 months, Emmett has come face to face with many facts that most kids never have to realize. Facts like not being able to walk, not being able to swallow, not being able to - well, these facts go on and on. This is the harsh reality that Emmett lives daily. So when it comes to facts about Santa Claus, a fictional being that Emmett loves, then suddenly the truth and the facts are completely irrelevant - as even after this careful discussion he still absolutely believes in Santa Claus. He just wants to.
Emmett is focused on one word right now, constantly asking every adults' favourite question, "Why?", over and over until he is satisfied with the response. Just as large as his desire for factual information is his love of play. His imagination is incredible and the fictitious worlds that he creates in play are immense. The untold hours that we have spent searching in the 100 Acre Wood for Christopher Robin, whose voice we can hear (it's actually Emmett pretending to be Christopher Robin) but C.R. himself remains elusive and unfound, are seriously endless. (Did you know that it is very challenging to find a Christopher Robin doll? But even if we did find one, that would spoil the game so we don't want one.) In this case, he wants nothing to do with the facts. For the same reasons, Emmett wants Santa Claus - just not up close and personal. That is too much. From a distance only, please. Otherwise he will simply look the other way so that Santa Claus cannot be seen.
It is Christmas, however, and we have to tell you that Emmett absolutely got some presents. Some would say he was spoiled with presents. I would say that in some cases, perhaps the term spoiled would be appropriate but here, with my grandson Emmett, I will become quite defensive, protective, and even angry should you say he's spoiled. Bringing joy to a little boy who cannot walk isn't spoiling. Giving laughter to a little boy who cannot reach out and grasp something due to his limited movement isn't spoiling. Expanding the imagination of a little boy who is fed through a tube is not giving too much. You may disagree with me and that is fine. When you've had nearly 20 lumbar punctures like Emmett has, come and talk to me and maybe I'll be more willing to listen to your perspective! Don't get me wrong, Emmett has an amazing life and he loves it, but that doesn't mean that it is not a challenge. This Christmas Emmett's favourite present was a tea set because, even though he has never eaten food, he does love playing with food. His kitchen, however, was missing a tea set so until now he hasn't been able to properly serve tea or hot chocolate. This gift has rectified that untenable situation. Presents also include a mini Winnie the Pooh set (his third and by far the tiniest) that he already loves and will be great for car trips. The stuffed Woody the Cowboy, Buzz, Jessie and Bullseye are already in their place on Emmett's bed. And among all of his other presents, which were plentiful, my favourite was a remote controlled excavator. He says he really likes it. All of the adults wanted to have a turn with it. Hopefully it will provide lots of play for Emmett as he learns how to use the complex controller. And strengthens his fingers to push the buttons and switches.
As we close off this Christmas Day blog, we encourage you to look beyond the presents. Look to the presence of family and friends. Embrace that. Remember, maybe even in the voice of Linus during the Charlie Brown Christmas special, that good news that came 2000 years ago:
[Linus drops his security blanket on purpose]
Linus Van Pelt: "for behold, I bring unto you good tidings of great joy, which shall be to all people. For unto you is born this day in the City of David a Savior, which is Christ the Lord. And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.' And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men.'"
Linus Van Pelt: [Linus picks up his blanket and walks back towards Charlie Brown] That's what Christmas is all about, Charlie Brown.
Christmas, that's what it is all about.
Public Service Announcement: When you are out and about this Christmas and New Years, remember, if you're sick with a cold then don't go out. Stay home. Sure, you've been worse and want to be the life of the party. But your cold could be the death of the elderly person you see or the medically fragile individual that you cross paths with. So stay home. Keep that gift to yourself. Wash your hands. Use sanitizer. Stay home until you're well and help keep others well too!
Can you believe how swiftly summer has flown past! It's now autumn! In fact, on the rare day that it isn't raining or foggy here in the Fraser Valley, the distant mountains - which were almost bare - are now wonderfully covered with snow. The temperatures are falling. So many changes! Plus so much activity! Aunt Katie from Australia came to visit and smothered Emmett with kisses! Emmett was off to Camp Squeah near Hope for a Church family camp. He's been out to the pumpkin patch where he selected a pumpkin - that he announced would have a Hippo carved into it. Just like last year. And just like last year, and the year before that, he proclaimed that he would be Woody the Cowboy for Hallowe'en. Of course, that meant a desperate search of local thrift shops and stores to find a costume that would fit. As this little boy has outgrown all of the Woody the Cowboy costumes that he owns. And that is a few. Perhaps we'll have a Woody the Cowboy pumpkin too! Emmett was out at the Chilliwack Corn Maze where it was pouring rain. As a result, he wasn't out in the maze itself. His power chair would have been so bogged down in the mud that it would have never gotten clean. He did, however, dress up as a Giraffe for this outing. This creature of habit is willing to change things up. In fact, he's already agreed that next spring the family camping trip should be somewhere other than Alice Lake Provincial Park!
Time flying by also means that it has been almost four months since his last lumbar puncture and dose of Spinraza. His next one, which will be number 16, will be on October 30 at BC Children's Hospital. And yes, Emmett is still planning on dressing up and heading out trick or treating on Hallowe'en. He wants to get some more shakers! Shakers, if you're wondering, are Smarties. You may have forgotten that Emmett doesn't eat anything by mouth, so Hallowe'en treats all get passed on to grandpa (if I'm lucky). Except for Smarties, which make a wonderful noise when shaken thus Emmett knows them as shakers! Of course, this is where we can let you know of a tiny step for all of us but a huge leap for Emmett. He is experimenting with swallowing just a millilitre or two of water. So on the 30th please remember Emmett. While playing with his dolls one of them recently went to the hospital for spinal muscular atrophy. Then Emmett gave his doll a dose of Spinraza. That hurt. Emmett knows this and, knowing that this is just a week away for himself, really isn't looking forward to this hospital trip.
As Emmett matures and grows, he is getting stronger and stronger plus bigger and bigger. And heavier and heavier. As a result some modifications are required. He has a lift now in his bedroom that his parents can use to transfer him from bed to wheelchair and whatever is necessary. This will soon be added to their main living room, where it will be easily accessed for most daily activities. As all of you who follow along on FaceBook know, there are plans to modify their bathroom to make it much more accessible. In fact, on FaceBook we had a somewhat spontaneous fundraiser and with your generosity over $5,000 was raised in one week for this very important project. As you can imagine, this is a huge financial gift that will cover about a third of the anticipated cost of this renovation project. Utilizing the existing space plans have been drafted that provide for a roll-in shower, maintaining the tub (used for light physio and water play), and obviously an accessible sink and toilet. Hopefully January is going to be the bathroom renovation month.
Emmett has another great new piece of adaptive equipment. A walker. This unit has a bicycle style seat that supports his weight while allowing his feet to touch the floor and his hands can power the wheels. So far it is more comfortable than a loaner one that he had tried out, but it's certainly not his favourite device. We also got a light switch extender - a unit printed off on a 3 D printer - that Emmett can grasp when he is in his wheel chair. He doesn't have the strength to use it yet, but it's another goal to have and an opportunity that, without this extender, would have been well beyond reach. There are so many things that are simply overlooked by able bodies - yet are a huge obstacle for those with physical challenges.
On October 22nd individuals and families affected by Spinal Muscular Atrophy marched in Victoria at the parliament buildings. BC was an early adopter of Spinraza for individuals with SMA Type 1 but has still not approved this incredible drug for patients with Type 2 and Type 3. As Spinal Muscular Atrophy is a progressive disease, these individuals will really benefit from this drug that will stop and possible reverse the disease. Emmett has Type 1 but with this drug has improved to where he now presents as an individual with Type 2. The changes that this drug has on individuals is incredibly positive. Emmett meets all of the criteria that BC has for accessing Spinraza but this drug should be available to everyone.
According to Emmett, I am "Silly Grandpa"! No amount of coaxing and suggestions like Super Grandpa or Awesome Grandpa have caused him to deviate from this moniker. This little boy is stubborn - thus "Silly Grandpa" it is. Some could suggest that it is elder abuse! Teasing that borders on bullying! I, however, think that is it awesome. Fair play for a little boy who in the past I've called 'Super Diaper Head Baby' (don't believe me, there are a few blog posts that even feature S.D.H.B. and I'm pretty sure that I've promised that there would be one more! Emmett!) and tease on a regular basis. Together we push the boundaries. We do stuff like swing higher on the swing than his mom believes is appropriate. Silly Grandpa. Go outside together and put him down on the grass (which he hates touching) so that we can look at the clouds together. Silly Grandpa. I let go of the three wheel bicycle handle while going down hill so that Emmett experiences freedom plus the exhilaration of knowing that Grandpa is running beside him so he is on his own and his grandma and mom are shouting in the background that I should stop immediately! Silly Grandpa!
Silly Grandpa is the truth. Emmett and I have a history of doing silly things. I pick him up off of the floor and bump his head on the ceiling! Or the door frame or wall as I'm carrying him around. ** IMPORTANT NOTE: very GENTLE bumps.** I roll him over on his gym mat and push him onto the floor. I carry him outside and we roll down the hill together. We make giant splashes in the bathtub and get water everywhere! I've bounced large, inflatable balls off of his head and face. We have gone up and down steep hills on his power chair. We've gone through culverts (big ones in parks!) together. We splash in puddles! Yes, I'm Silly Grandpa. Because, like everyone else who surrounds him, there is nothing better than hearing Emmett laugh. That is the best sound in the world.