February 2016

A quick flashback to September 10, 2015. 

Back to 2016!

If a picture is worth a thousand words, how much is a video worth!

At four months, even if he was in water Emmett could only make tiny movements with his legs. So imperceptible sometime that if you weren't touching his legs you didn't see the muscle contracting. He could manage tiny movement of his ankles. Between five and six months he could not do much more than raise and lower his arms - at one point it was only his right arm. His ability to slightly turn his head was also lost. It was a very challenging time. More challenging than we have ever shared on this blog. However, miracles are happening and look at this little fish! He loves being in water. Our little Nemo! Keep praying for Emmett, other little ones with SMA, and the researchers in their search for a cure.

Want to learn more about how you can help cure SMA. It takes funds to support the research. But even more, your kind words and thoughtful emails help support the brave families who are involved in the unknown factors of clinical trials. They have hope - but your support offers even more hope! Watch this video. Note: The children in this video may have either SMA Type 1 or Type 2 or Type 3.

Emmett has Type 1.

Emma, Addison, and Atticus each had SMA Type 1.

The following video is produced by Families of SMA Canada. Their website is http://www.curesma.ca/

We are celebrating today because this is Emmett’s 11^th month birthday. What a joy to spend time with this precious little boy. Emmett is happy and loving being the centre of attention ... Well, actually, he was somewhat irritated and aloof when I was just with him. Not interested in anything that was going on around him and certainly not ready to give anyone one of his million dollar smiles. He’s healthy - for a baby with SMA, Type 1! He constantly surprises us. Today, when Alisha asked him to blow bubbles, he did! Without hesitation. When Josh asked what sound a dog makes, Emmett just stared at him. However, earlier today he apparently made the woof woof sound all on his own. I cannot verify that, but I can verify that I saw him blow bubbles! This is a day when we forget about all of the concerns of the world and simply spend time enjoying the miracle of life. And blowing raspberries together! We have all said it before, that when you’re with Emmett and he smiles then the only thing that is possible to do is to smile along with him! And today, we are smiling. Even if Emmett is a bit on the grumpy side.

If you are wondering, the answer is no. Emmett absolutely did not get another helium balloon for this month birthday. I will fix that very soon - maybe with two balloons! Pam and I are keeping busy with getting settled in B.C. and I simply didn't get out to pick one up. It is unlikely that I will go bankrupt buying helium balloons, but according to some people in our family that is a possibility. Emmett, with his amazing eyes and expressions, has already told me that when he’s older he would like to have enough helium balloons to allow him to float around the house.  I said no, that he'd have to wait until he is older to do something risky like that. But that’s likely doable, as long as his mom and grandma’s don’t find out. His dad and grandpa Willms are possibly going to support this endeavour.

Do you think that for his 12 month birthday – his first year – that he would be old enough then?

Emmett's Occupational Therapist designed and built an 'arm' crane for Emmett that is hinged and extends. This allows Emmett to move his arm more extensively. With the weight held by the sling, he can concentrate on movement rather than on picking his arm up. It is great to see the look of concentration but also joy as he explores the unknown.  In the pic where he's sleeping, Emmett is buckled into his car bed. It is, I'm sure, the only way to travel! The last few pics, just a few more opportunities for this little boy's eyes to cause you to catch your breath! Emmett now wears his bi-pap machine for naps in addition to overnight sleeps. It isn't his favourite apparatus, but he does love story time and that sort of takes away the irritation of the bi-pap mask.

Stay tuned for an upcoming blog on Emmett swimming - we just have to get some photos that are discreet and won't embarass him when he's older!

Mommy, why can't I float around the house with helium balloons? Grandpa says it will be safe!

Three of Emmett's friends have left this world in the last month and a half. We are crying for these little ones, their parents, families, and friends. 

Emma

February 2, 2015 to December 25, 2015

Addison

February 2, 2015 to February 3, 2016

Atticus

November 25, 2015 to February 6, 2016

The twins - Emma and Addison - plus Atticus are Emmett's soulmates. Together they shared the diagnosis of the terrifying genetic disease - Spinal Muscular Atrophy, Type 1. They and their parents were occasionally at BC Children's Hospital at the same time as Emmett, Alisha, and Josh - sharing the heart aches, the highs, and the lows. Sharing together on FaceBook the struggles to stay awake through the day after nights of little or no sleep. Sharing ideas for toys and making plans for play dates. Parents separated by distance yet with a connection created by this disease. Talking about the joys of parenting medically fragile children. Knowing at times the despair of parenting medically fragile children. Parents struggling with a diagnosis that turned their world upside down and inside out. Parents grasping at the possibility that an experimental drug trial offered hope. Yet knowing that not all babies in the trial would get the real drug. Or even if this so called miracle drug would provide the miracle that we all want! Parents struggling to make sense of a world where beautiful babies can be born with a disease that not only takes their ability to move away, it takes their breath away.

Right now, we are all crying. It is not fair. These three angels have left us far too soon.