I understand the utter exhaustion an SMA parent feels when caring for their SMA child at night. For those who don't have help at night, a parent is constantly on edge waiting for the sound of some machine.
I know what it like not to have these challenges, as my oldest has transitioned from critical care 24/7 to minimal care. But whether your child needs critical care or not, I have done three things that make a huge difference in how well my child sleeps and moves at night.
(That being said you want to make sure you keep the room warm enough so they don't get cold.)
The strength of an SMA child is often determined by their type and if they fall in the weak or strong category of that type.
One of my daughters, who is a weak type one, does much better moving at night when I use light-weight blankets. I use heavier blankets when nothing else is available, but I have to get up several times a night to move for her since she can't move under the weight of the blanket in her sleep.
During the day, my daughter can play with heavier blankets, but night time is when you can really tell she struggles with one weight more than the other. This leads me to the next solution.
This is something I would recommend if your child is awake or asleep. For a long time I didn't even put pants on my baby. The weight of the pants significantly decreased her leg movement. With the help of a therapy called Movement Lesson™ I have taught my two children how to move better with clothes on.
I am sure you have noticed that your child moves better without clothes. But we have to wear clothes.
I would recommend against putting your child in heavy-weight clothes like Jeans. Yes, we want to see our kids wear cute things and to wear what other kids wear. But when clothes are heavy or tight, it makes it harder for SMA kids to move.
I remember the first time my daughter lifted her legs with pants on. She could do it without pants, but finally being able to do it with pants made me super excited.
While I am super appreciative of Spinraza, it didn't teach my daughter how to move now that she had the change. I know my daughters movement success is from Movement Lesson™. Since 2017, that has been my daughters primary therapy.
For three years I did traditional therapy with Movement Lesson™. I eventually discontinued traditional therapy. I could see more movement results with one hour of Movement Lesson versus 6 weeks or more of traditional therapy.
My favorite part about Movement Lesson™ it that I learned how to teach my child to move in all sorts of environments, with and without clothes, in the water, out of the water, in a wheel chair, and so much more. I did this all at home with a few trips to Arizona for training to become a Movement Lesson™ Practitioner for SMA.
This leads me to the last solution.
What do I mean by this? Thats another great perk of Movement Lesson™, you can work on your child when he or she is asleep and enhance their movements. IT'S FANTASTIC!
All the equipment makes our children stuck to the floor. So teaching them how to move through gravity with their equipment on is super important. You can do that with Movement Lesson™ techniques.
All the equipment is so heavy on our SMA kids, especially the Bipap face mask. But you have the g-tube, the length of the feeding tube, and the oximeter. All these things play a factor in our kid's ability to move at night. When they can, it's a glorious feeling to get a little more sleep (unless you have more kids, which is what I did, so I still have to get up with the babies, even if my more critical SMA daughter is doing fine).
As a side note; my daughter can move on her own at night, but when she is sick or going through a growth spurt, I still have to move her at night. That being said, like I said in the video, I check on her periodically throughout the night (when I get up to go to the bathroom), and if she hasn't been moving, I move her. Pressure points are not fun to deal with.
I highly recommend Movement Lesson™ to any SMA parent. It's my personal goal to let the whole SMA community know about the best therapy for kids with Spinal Muscular Atrophy.
Movement Lesson™ can be a little difficult to get started with, but that's why I am here to guide you through it. Or you don't have to use me as a guide you can just jump in.
Movement power is in the pelvis, but our kids need a lot of work in the spine and head as well. Traditional therapies say that SMA kids need more muscle to accomplish milestone movements, but I have seen exactly the opposite. My oldest has little muscle, but instead of using muscle she uses things like balance, counterbalance and rotation in her system to create milestone movements.
Here are free and paid links to Movement Lesson™ videos and you can start improving your child's movements today.
Free Head and Spine Videos: Click Here (takes you to YouTube)
Free Pelvis Videos: Click Here (keeps you on this site)
Paid Spine Course: Click Here (takes you to Movement Lesson™ home site)
Paid Head Course: Click Here (takes you to Movement Lesson™ home site)
To get coaching services from me: Click Here (keeps you on this site)
Contact me with questions: [email protected]