We have frequently heard from family and friends who, after reading Emmett's Journey, literally do not know what to do. That is understandable - Spinal Muscular Atrophy is a disease that defies understanding. Emmett has been receiving a drug that is now approved by Health Canada. It is now being considered by provincial governments, however, due to the drug's exceptionally high cost, the drug is only being recommended to a very small subset of patients. Our government needs to approve this drug for all - it will improve the quality of life and literally save lives. Our government also needs to negotiate a much better price for this life saving drug, Spinraza.
Want to know what to do - take a couple of minutes and sign this petition. Share it with your friends.
Want to know why? Because Emmett!
Emmett is still part of the long term study of Spinraza. This means that for him the drug is provided at no charge and this will continue for the next few years. When Emmett began this drug trial, we didn't know if he was on the real drug or a placebo. We didn't know if it would work or not. We just knew that Emmett was losing strength and capability rapidly. His intelligent eyes asked us what was happening to him. And now we see him continuing to make progress and approaching his third birthday. We want him to see many more.
And we want other families facing this rare genetic disease to have hope. Spinraza is a treatment. It is not a cure. But it is hope.
Please fill out this petition.
The question we've been hearing most frequently since Emmett's release from the hospital on Friday is "How's he doing?". The answer is that he is still doing amazing. He has bounced back from this fight with the RSV virus that was actually complicated with a Rhinovirus so much faster than anyone anticipated. He will have a checkup in a couple of weeks to ensure that his lungs are clear - but right now this little man is ready to play soccer.
You can stop looking - in the last blog I mentioned that we were looking for a replacement Woody the Cowboy. Emmett has quite a few Woody the Cowboy toys, but had lost his tiny one. It has been missing for over a month and was really missed during the hospital stay - so we're excited to announce that Woody the Cowboy has been found. Woody was hiding with some other toys in a very safe place. So safe that we couldn't find him! Now Emmett has all of his 'tiny' buddies from Toy Story!
And what better way to show how Emmett is feeling than a bunch of photos and a video of him outside playing chase and soccer. Blog posts will now be reduced to a more regular one or two a month. Thank you for your fantastic support!
Emmett loves his new Hippo hat - custom made by Klo.
Emmett is at Home
To Abbotsford and then home! The journey continues.
Emmett's Journey has been one of challenges with twists and turns that literally cause shivers to run up and down my spine. The past two weeks are ones that we want to forget but likely never will. Of course, there are some highlights that we will treasure. The strength that he has shown as he has rebounded so incredibly quickly from this fight with RSV; not even a flutter in his oxygen levels when he was extubated; and how he hides his face and shouts 'no' whenever his mommy tries to take his picture (but then he cranks up his 'cheesy' grin whenever anyone else takes a photo!). This photo was taken late yesterday afternoon. The NJ tube and the picc line were removed early in the evening.
While we will never know the answers to many of our 'why' questions, we see daily answers to our 'how' questions. How he interacts with his medical team. How he loves visitors. How he simply never tires of having books read to him (he is, however, very selective about which book is read to him!). How tiny he looks while lying inert in his hospital bed yet how tall he is when sitting in his stroller or wheelchair. How he had to be restrained - and as tough as that was on him and us - it was fantastic to know that he was one of the first, if not the first, SMA Type 1 children at BCCH who required restraining for fear he would pull out tubes, IV's, or whatever he could pull out! How strong this little guy is.
Thanks to the staff at British Columbia Childrens' Hospital for their expertise and care. You're simply there when we need you. The new facilities are wonderful.
And now it is back home. Access to more books. His power chair. His colourful megaseat. His cat Wendell. And for his mom and dad, a return to a bit of normal in what has been two weeks of incredible emotion and stress. Alisha and Josh so much want to express their appreciation for your support. The kind words, thoughts, meals were so greatly appreciated. The prayers that were shared from around the world absolutely lifted their spirits. And lifted their little boy!
Thank you! We sincerely thank you,
Alisha, Josh, and Emmett.
While the sign is a painting that was photoshopped, this became Emmett's Corner where family and friends gathered. Thank you to the facilities staff who cleaned around us and then after us. And the view out the window from Emmett's Corner is fantastic - looking out over the city and then the mountains in the distance.
Emmett is acting out the scene from Toy Story 2 where there are two Buzz Lightyears and they fight. But only one of them has Andy's name on his foot!
(If anyone has a tiny Woody the Cowboy that you no longer need, please let us know. Emmett lost his! This is the size that would just fit a three year old's hand. We have lots of bigger ones, but lost the tiny one!)
Emmett's Beaten This RSV!
Emmett seems to know that there is no time to waste. He was sick. Very sick with RSV and it was absolutely terrifying. But now he is better and he wants to come home. He hasn't had any pain medication since the weekend. He's required almost no deep suctioning since he was extubated on Monday - and none in the last 36 hours. Yesterday he went almost six hours with no breathing support. None. And when he is receiving support, it's now on his normal home settings and with his little elephant nose mask. His lungs are clear. He's eating food normally. Well, normally for Emmett as it's by G-Tube. (Nothing by mouth. Not even water. While he's dabbed his tongue in ice cream, he's never licked a popsicle.) He's talking and chatting and laughing. He's bored out of his mind and wants stuff to do. The most fun he's had this week was when they moved his bed to another room on Monday and then again on Tuesday. That was fun because as they moved down the hallway his Daniel Tiger balloon kept bumping it's head on the ceiling. Emmett laughed at that. Of course, the nurses won't race his bed up and down the hallways the way that he would like. It was just from room A to room B and then stopped. He wanted to keep on going.
He hasn't even gotten to go up to the fifth floor to check out the outdoor patio and garden. Maybe another time - when he's at the hospital visiting someone else! And not a patient himself.
Is this the normal recovery mode from RSV? Well, so far Emmett seems to have surprised most everyone on his medical team. It's certainly surprised all of his family. But it hasn't surprised Emmett. To him, it's now just another day. He was sick and now he isn't. Time to go exploring! But not at the hospital, at home please! When he was awake, he was not ready for any photographs so his hand was up to cover his face. But I assure you that behind that hand it is actually Emmett. When will he be discharged? Not today but just maybe ... very soon.