Daily/Weekly Thoughts

Crushing A Huge Milestone!


When you're told that your child will never be able to support the weight of their own head and never, ever be able to sit up on their own it is a crushing blow. Even though you're already sort of prepared for it because you know that your little one has missed so many milestones that a baby usually reaches. Fast forward a couple of years, a number of doses of the wonder drug Spinraza, a ton of prayer, endless hours of support, encouragement, sometimes tears, and here we are. Emmett is Crushing this milestone! Look at this little boy sitting by himself with no pillow supports holding him up. This is absolutely a first. Emmett has sat on furniture with back support. He has sat on the floor with lower back support. This is the first time he has been sitting with nothing supporting his lower back. Little ones with Spinal Muscular Atrophy - Type 1 simply do not sit on their own! Of course, there are pillows not to far away to protect him when he falls. Because he will fall. He describes falling as 'going bonk' on his head! And then he laughs. Spinraza is a miracle drug - it's like Emmett has received a touch of God. A drug that can rebuild the nervous system so that messages can move between the brain and muscles absolutely is a miracle.

Emmett is wearing his custom back brace in all of these photos and video clips. This back brace, visible in this photo, is a recent addition to Emmett's lifestyle and it is very important to straighten his spine and reduce the risk and effect of Scoliosis. This brace does not hold him upright - it only supports his spine. This in turn makes it more comfortable for him to sit. 

This brace is fitting to Emmett's torso. It's a two piece unit with the first piece fitting around his torso. The second piece goes around and has velcro straps to hold it in place.

When sitting alone Emmett's core muscles are doing all of the work to hold him up. You can see that when he loses balance then he's going to fall over. The brace is not holding him up. 

Of course, there is something else at play here. Emmett is focused upon a YouTube video. As he rarely gets to watch TV that is a huge attraction and absolutely makes him work hard to stay sitting so that he can watch. Fortunately for all of the adults, Emmett has left Paw Patrol behind and Daniel Tiger is now the number 1 video attraction.

Of course, Emmett's custom wheelchair is getting even more use now that the back brace is here. Emmett found it too uncomfortable to sit in for any length of time as his upper body would compress the lower portion of his torso. With the brace, Emmett is sitting in his chair for up to an hour a day. First thing in the morning he asks for it! This video was taken after about 45 minutes in the chair so he wasn't too eager to demonstrate how he can move it by himself but he certainly can. Backwards is best.


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