pre mature





Amanda got her first haircut.  Her hair wasn’t really long but I am a believer that if you want it to grow you need to trim it, plus it was pretty uneven in some places.  She behaved really well through the whole process and the end result is super cute.  She looks a little bit younger…I am such a nostalgic person and I miss baby Amanda so much, so the younger she looks the better for me :)


Thanks to ML's expert hands for my haircut!!

Monday Amanda and me went to music class for the first time (  I was a little bit nervous wondering if Amanda would like it or hate it. I was also a bit worried about kids asking questions with complicated answers, or people staring, but all the other moms knew about Amanda and that she would be part of the class and everyone just carried on like I was just any mom with a regular baby.  Amanda she absolutely loved it and I think the more we go the more she will know the songs, the instruments, the other children and make the most out of of it.

All dressed up for class :)

Maracas Time!

This week we tried Amanda on a stander for the first time.  Amanda’s therapist sits and stands her Monday to Friday for a couple of minutes.  To sit, he just holds her from under her arms and then stabilizes her head with a pillow and removes his hands from under her arms.  To stand her he holds her from under her arms while I hold her butt with one hand and straighten her knees with the other.  She sits for about 3-5 minutes and stands for about 2 minutes every day…if she is stable.  Sitting and standing are part of everyone’s lives and not doing so can add future complications to Amanda’s already fragile health.  We do it to prevent low bone density and painful contactures, plus it gives her a more real perspective of life and most important, she enjoys it :)

The stander we trialed isn’t ours, but we wanted to see if it worked for Amanda.  It didn’t so we are in the process to getting her one that is known to work well for kids with SMA Type 1.  We stood her in this one for less than a minute and she was happy during the fitting process.

This is how I sit with my therapist.

And this is how I stand. I am much more taller now, this was 3 months ago.

And I'm up with no one holding me!



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