Today was one of those long days with the kids. Olivia is still having some "roid-rage" episodes and I found myself having a hard time being a patient and loving parent today. I'm also so shocked at how quickly I noticed some of the negative side effects of the steroids. Olivia was just on IV steroids from Wednesday to Monday morning, just 5 days but in just that short amount of time I saw how weak her leg and trunk muscles became. Olivia went from easily going up and down stairs by herself and running around to not being able to bend over and pick something up from the floor. Peter is getting close to walking so he's actively trying to pull up on anything, he tried to pull up on Olivia a couple of times today and ended up pulling Olivia onto the floor. She's just very unsteady on her feet. It's sad and scary to watch but hopefully she'll start building up her strength up again now that she's not on the IV steroids anymore.
Peter cracks me up 100 times a day. He loves to pull all the pots and pans out to play with them when I'm busy with Olivia. He's quick too! He can empty an entire cabinet in the time it takes me to get Olivia started on her breathing treatment. He's also quite the performer and I got some of his funny facial expressions on camera. Kids with Sanfilippo Syndrome tend to have less control over their facial muscles and expressions so it's a different experience for me to see the funny faces that Peter makes. I got a few on video today.
Our home-made Highchair
I LOVE watching Olivia and Peter play together.
The Mess-Maker
1 comment:
Adorable pictures!
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