Sophie's Journey: September 2011

On September 12th, Sophie turned 6 months old! Since the lives of SMA babies are typically measured in months and not years, we are going to do something special on the 12th of each month going forward. More on her 6 month party is below, however first is an updated on how she's doing:

As past posts have mentioned, Sophie will continue to get weaker as time goes on. This includes the muscles that control swallowing and breathing. Due to this, we have started to notice Sophie having more trouble in prolonged upright positions (she is unable to swallow saliva as well as she used to, and being upright makes it more difficult to breathe at times). We have switched to a carseat that allows her to lay down flat and purchased a new stroller which reclines all the way down. This allows us to continue getting out and about as much as before. With all of this said, we are still able to hold Sophie upright, but if we notice that she is sounding 'congested' we simply switch her position. If Sophie does becomes too congested, we have to remove the saliva at the back of her throat with a bulb syringe...as her condition worsens, we have a suction machine which will help make this process more efficient. Sophie is such a sport and tolerates this really well.

Though Sophie is slowly becoming weaker, her mind is advancing just as a typical baby's does. We have been keeping busy -- keeping her busy! She often gets bored with toys after a few minutes, so it feels like we are constantly switching activities to keep her stimulated (she isn't able to entertain herself as easily as a typical baby due to her weakness). Some of her favorite things to do are: reading books, playing with the iPad (there are kids games where we can help her touch the screen and allow her to 'play'), playing with toys that light up/sing, playing with balloons, watching the trees outside our window, staring at the ceiling fan, etc. She likes movement, so we do a lot of walking around with her, swinging, dancing, etc. Sophie also still loves bath time, which provides an environment where she can more easily move her arms/legs because of the buoyancy of the water.

Sophie has the sweetest little personality we've ever seen. Though she likes keeping busy, she rarely complains or cries. She is easy to put to sleep (most nights) and is smiling more and more.

Now to the fun stuff! For Sophie's 6 month birthday, we took her to the Brookfield Zoo (which is bigger than the Lincoln Park Zoo near our place). After the zoo, we had a small birthday party with an Elmo cake, balloons, and some of her favorite people.

The following are some pictures of our day:

Loading up...She's excited!

Here we go

Sophie's first carousel ride

Very interested in the sea lions

And...she's out

We continued on even though the star of the show fell asleep

This picture was taken for Aunt Kim and Aunt Juli

One last stop with Daddy

As you can see, Sophie fell asleep half way through the zoo trip...but at least she got a good nap! She usually stays up all day because she doesn't want to miss anything.

And now for the party: