Update: Everything went perfectly (apart from some scheduling delays) and Emmett is happy and at home.
Pray for Emmett today. He's back at BC Childrens Hospital for the scheduled visit and next injection of Nusinersen. Interestingly, this new drug is now going onto at least it's third name, Spinraza. We don't really care what it is called - all we know that it is amazing science that is working!
Most people go through their entire life without a lumbar puncture. All they know about it is that it is something that is very uncomfortable - painful even. Wednesday, November 23 - Emmett is having another Lumbar Puncture. He's lost count of how many he has had ... of course, he hasn't learned how to count yet. Alisha and Josh have not lost count. They've felt every one!
Thanks to your prayers and positive thoughts, to a supportive family, to his incredible parents and, at just over twenty months, Emmett's indomitable optimism and enthusiasm - Emmett is able to have a lumbar puncture and if past practice continues within hours seemingly has forgotten it. He just bounces back! Some kids would be in tears if they were back at a place that hurt them. Not our little Emmett. He literally views the hospital as a place where he meets his friends. We are so blessed. Emmett is over the cold that he had last week. Like previous colds, he still requires a bit more suction than usual but this healthy little kid beat his cold in less than half of the time that it has taken me! Alisha and Josh will be watching him closely over the next couple of days. Not only because he has had the lumbar puncture but also because he has been interacting with a whole bunch of people that are somewhat new to him. And as much as he loves new people and his doctors and nurses, there is always that risk of germs.
All Emmett needs is a brief nap and then he's ready to love his nurses and doctors all over again. Give them a smile or two. Show them his grip and how he is doing at holding his head up. And if allowed, he will show everyone how amazing he is at controlling his power wheelchair. If asked he may even sign an autograph or two. (Of course, Emmett hasn't learned cursive writing yet. That's not his fault - it's not on the curriculum anymore!).
A highlight for me this week was being over and visiting Alisha and Emmett. Alisha had me wait on the back porch and then opened the door and came out. Following behind her and driving his chair was Emmett. Out the doorway, across the porch to come to me, and then down the ramp into the garage and then out onto the front yard. Impressive skills! Emmett literally would drive right up to me before stopping. No fear. But you know what - he did the same with my car and their van. Without touching the vehicles except, of course, with his hand. He loves touching cars and trucks. He loves waving at his reflection in the paint. This little boy loves waving. And his control of his wheelchair is incredible. Of course, he will still run over feet and toes. And if he's really happy to see you he may just run into and almost over you!
This is where I must confess that I get angry. You see, there are things that Emmett and I cannot do together. If I was a really together Christian then I'm sure that I wouldn't be angry, but I am. Angry, that is. Because I want Emmett to experience all of those things. I'm also worried because I know that Emmett and I will probably eventually try to do most of these things that people will think that we shouldn't be doing. In fact, we can do some of those things very soon, maybe even right now - we just have to plan it out more thoroughly. Yet even with planning I'll get in trouble with my wife, my daughter, my son-in-law (unless he's in on it with me), and probably lots of other people. If it makes Emmett's day, it will be worth it.
Then that anger is pushed aside and, with Emmett nodding his head like he did this morning as he's asking for another story, we will read a story together and laugh together. Oddly enough, Emmett didn't say no to any story this morning. From the first book he enthusiastically indicated he wanted it read to him. "If you give a mouse a cookie", "Paper Bag Princess", and the list goes on. He wanted them all! We read stories while his mom and dad packed up for the trip to Vancouver.
We're praying for you, Emmett. Have a safe procedure and we'll see you back home soon! (And don't worry about breaking your wheel chair! I used to break my bikes, my dad's tractors, snowmobiles, cars and trucks, and then all of my own vehicles. I think it runs in the family!)
Now, back to Nusinersen now also called Spinraza. Last night Avis Favaro on CTV news did a segment on Spinal Muscular Atrophy and Nusinersen. It is really great to see the National Media share this story. Emmett is one of only a few kids in Canada who was part of this study -- and now it's getting administered to SMA kids in the extended program. See the CTV National segment here. As we've said before, we are so hopeful that this drug changes other lives the way it has changed Emmetts. Even better, the drug is being given to children much younger than when Emmett started at Seven months. And that just means it can start working that much earlier!
UPDATE 12:45 PM PST:
The procedure went very well. Emmett is growling like a bear - he's happy! Emmett, Alisha, and Josh will be home soon.