As I have said before, Evan is not a great eater and he is even worse when he is dealing with constipation issues (a result of his Spinal Muscular Atrophy). To get more bang for my buck I add veggie puree's into everything!! Whether it is food I am making from scratch or my lazy meals of pancake mix, spaghettio's, or Mac n' Cheese there is pureed veggies in everything. My family doesn't even know they are getting veggies in every meal they eat! I still offer veggies on the side, but this way I'm not stressed if those veggies are ignored.
I do a lot of our "therapy toy" shopping at our local consignment store. We don't want to be spending a fortune on toys just in case Evan isn't able to use them. I scower the shelves and can usually find some pretty good toys.
This Kawasaki drum set has been wonderful! He is able to push all of the buttons, and slide the bars by himself. In addition to this he "whacks" the various drums to add to the beat. He learns music rhythm and beats and exercises his muscles, all at the same time. It is a great toy!
Landon is such a big boy and already wants to help take care of his big brother Evan. He kept pushing him around the store ... it was too cute! These two boys already have such a special and close bond that is only going to grow.
We had been told on numerous occasions that using a cough assist machine on a regular basis would be beneficial to Evan's health. It is an amazing machine and fortunately for us Evan thinks it is "funny" to use.
Something that we have found to work well when he doesn't want to use it is for us (the parents) to use it. Along with the pediatric mask the hospital gave us an adult mask. Evan and I take turns using it and I know that that alone keeps the machine "fun" as opposed to a task he has to do.
SMA kids are very "tippy" and as a mother I am always a little paranoid at bath time. I got this really cute tub liner at IKEA. It was quite inexpensive and helps to keep his cute little behind from slippin' and slidin'.
Bubbles are a favorite for most toddlers, but I have noticed some wonderful therapy results with Evan. My friend sent Evan this bubble machine for Evan's birthday last year (or Christmas ... I can't remember) and he loves it. The button is just easy enough for him to push, so he can control when the bubbles are blowing or not. The other great therapy is that he is constantly reaching his arms up to get the bubbles. When we are playing with bubbles he doesn't feel like we are doing therapy :-)
This discovery came on quite by accident! I had bought this Chinese lantern at Ikea for $5.00 and didn't end up using it in my decorating. It was just sitting on our basement floor and Evan calls to me. When I look up I see him holding it up in the air with his arm. I was amazed to say the least! This Chinese lantern is light enough that he can lift it, and big enough that it still exercises his muscles.
Another added benefit of this glorious discovery?? SOCCER!! We have purchased beach balls and soccer balls, and basketballs for him to push around in his stander, but they all get stuck and then Evan can't move anymore. Because this is paper and wire it doesn't get stuck!! There are different sizes and I imagine all would work. Evan loves to "kick" this ball around and we all chase it!
I naturally a naturalist. I am not an extremist, but I am very aware of what goes in and out of my families bodies.
Evan is not a great eater. Without getting into too much unnecessary details the fact that Evan is naturally small, has SMA, and is a terrible eater always worries doctors. For a while I would seriously stress out about it, but I have gotten to the point that I understand the way HE grows (I have been watching his growth chart long enough to piece it together), and I am not going to stress about it anymore. I am aware, I will continue to monitor what goes in and what is coming out but I have come to the parental conclusion that if Evan is mostly eating healthy food items I am not going to be overly concerned with a specialized diet just for him. That is my opinion for now.
We have two beautiful children, one of which is a 2 year old son with Spinal Muscular Atrophy: Type 2. Our life can be complicated and crazy. I wanted a place to record some of the things I have experienced as a mother of a child with SMA. I will record anything that might be helpful to parents of physically handicapped children.