While my Mom and Dad, Emmett's grandparents, are reluctantly back in Ontario for a short time, my Dad informed Josh and myself that it is now our responsibility to take over the blog. And, since it is getting pretty close to Thanksgiving, I just wanted to express our thanks and appreciation to our family, friends, church community, and even to some kind strangers who have been so very generous to us. We cannot fully express how grateful we are to have such a loving community that is holding us steady right now. One of Emmett’s lovely (great) aunties made him a blanket and embroidered on the back are the words, ‘Emmett, loved beyond measure', and I am so thankful because I know that this is true for him.
The day that Emmett was diagnosed with SMA Type 1, my thoughts were filled with grief and fear and confusion. We had never heard of SMA before and could not understand how our healthy baby could actually have a terminal neuromuscular disease.
Then skip forward to today. Today, for the first time in over a month I got to spend a day with just the two of us, just my son and I. We read books, blew spit bubbles (Well, he did. Not Me!), went for a stroller ride, looked at trees …
When Emmett was born, Josh and I would argue about who would get to hold him. When he sleeps, I have to patiently sit on my hands while I wait for him to wake up again, because I can’t wait to cuddle him again. Nothing in the world makes me happier than when I see how much Emmett admires his dad. Emmett knows that whenever his dad is around something fun is about to happen. I am so thankful for my son, who couldn’t be a more cheerful and happy baby. It’s hard to grieve when a chubby, toothless, grinning face is gazing up at you.
Right now Josh and myself have a lot of different options to wade through regarding how we will proceed with Emmett’s treatment. We are starting to organize a therapy program for him, which will eventually include water therapy, physiotherapy, and occupational therapy. We are working with a social worker and the Infant Development Program to find funding for these therapies. This week we also will learn if Emmett is eligible to be entered into a clinical trial for a drug that could potentially mean a substantial improvement in his quality of life. We realize that this drug is only in testing stages, but it has done some pretty amazing things for a few other babies with SMA.
We are praying that he will be in the trial and that he’ll receive the drug and not the placebo (66% of babies in the trial will actually receive the drug). The trial is set to start on Oct.7th. I am grateful that we’ve been given this little bit of hope. According to researchers, SMA could be a curable genetic disease within 5-10 years. We don’t really know what this means for Emmett, but we are going to do whatever we can for him right now.
(Photography by Jocelyn Isaak)
Pam and I are having a challenge. We've been back home in Ontario for not quite a week and it will be another week before we head back to BC and it is true. Distance makes the heart grow fonder! However, our hearts cannot get their fill of Emmett's smiles and expressions and cuddles from half-way across Canada. We will be driving back and, like Emmett as a new born coming home from the hospital in his first car ride, we will be anxious for it to be over.
Rhonda and Roger are supporting Alisha and Josh and keeping Emmett very busy. In addition, Emmett had a visit from a physiotherapist who watched Emmett play one of his favourite games - bouncing a helium balloon. The first balloon is starting to lose it's ability to float but the second one is still going strong. And a third and fourth will be sure to be added soon! Outdoor walks and indoor baths are both highlights for our little man. Soon Alisha will be giving him permission to go in his Jolly Jumper again. It has been off limits while the area that the G-Tube surgery took place heals. Of course, then there are photo opportunities and this little boy absolutely shines when a camera is close by.
Soon we will have a guest blogger doing some writing here. Stay tuned.
Of course, it could be that I'm sad and missing him which caused me to search out these pics. In reality, he's still a very happy little boy and his every wish will be, if we possibly can, granted!
Saturday he spent the day at his Grandma and Grandpa Willms' house. There he got to see his Aunt and Uncles. Everyone got to eat lots and lots of great stuff - while Emmett watched and, I'm pretty sure, drooled. He doesn't know what he's missing, but he knows that the big people are getting stuff he doesn't. Still, breast milk is pretty good stuff. Emmett gets all of the nutrition but none of the taste as it all goes in via his G-Tube. We are getting pretty good at this system. Even though we've sometimes gravity fed him faster than we planned (the new setup won't allow that to happen) or once we're not sure how much he got - as a port was open and the bedding was soaked. Emmett is very patient with us and he knows that we have to learn.
Waffles with strawberries, whipped cream, and ice cream - I think that we need to blend some up and feed Emmett some awesome stuff like this. Emmett loves his family and he loves crowds (even though his doctors have advised that he avoid them. Then on Sunday he had a huge number of extended family from Josh's side visiting. It was a special service at Level Ground Mennonite Church. Emmett was invited to the front with his mom and dad as it was his baby dedication service. The message was great - about building community by being a Christian who follows Christ's example of going the extra mile. Then after the service everyone was invited downstairs for an amazing soup and buns meal - with donations being accepted for Emmett's anticipated medical and care costs. Some of Emmett's Ontario family watched via Skype and others will have a chance via YouTube - depending upon technology.
The Church basement was packed. What an outstanding turnout. Throughout the service and the following lunch, Emmett was on his best behaviour. Barely a whine from him throughout. It was, however, quite a hectic day. When he got home he fell asleep and had a nap - that was at least four hours long.
Emmett got a second helium balloon this weekend. His look was one of dumb-founded amazement, as he tried to figure out how his balloon had expanded into two. It was worth every penny to watch him try to figure this out. He actually liked his two balloons better than a bubble maker that makes hundreds of bubbles in seconds. And like millions of babies before him, Emmett has figured out that when he can get his thumb into his mouth that it is a pleasure that his parents had previously denied him.
What does a little boy need to learn from his grandpa? Well, so much to teach and share. I pointed out to Emmett that in order to keep the garage neat and clean, that he should take the necessary tools and materials for any project from the garage into the kitchen. Not only will this keep the garage clean but the kitchen has likely got better lighting and heat in cool weather. Then we completed a small project in the kitchen to reinforce the idea.
One morning when only Emmett and I were up, we went around and looked out all of the windows and into all of the mirrors. Since Emmett had not really done this before, it was up to me to show him how to press his nose up against the window pane and the mirror. Sometimes he got carried away and licked the glass. I figured that was okay since the windows were pretty clean - shouldn't be any germs on them. All little boys need to look out windows to dream about the adventures that lay off towards the horizon!
This morning was a lovely fall morning. Cool, but dry (apparently it's going to rain for the next three days). So Emmett and I went out for the first time in his little red wagon. It will be a challenge to speed down hills with this as you cannot steer the front wheels, but when he's ready for that, I'm sure that we'll find a way. Plus it was time to teach Emmett how to use a camera. Thanks to Families of Spinal Muscular Atrophy Society Canada for this little red wagon - all little boys need a wagon. So do little girls - when Alisha and her sister, Katie, were little we had many excursions in our wagon. I have to warn you - this is a long video and it is not amazing cinematography - but if you love Emmett then you'll enjoy it!
Emmett is looking forward to this weekend. All of his Willms' family will be here as his Aunt Jennie and Uncle Benjamin are flying in from Alberta today. Party time! Stay Tuned for some stories of the Willms' gathering.