pre mature




Halloween fun and more!

I love how Halloween is the perfect excuse to dress up our little ones.  Last year we dressed Amanda as a cow and she looked adorable!  Looking back at those pictures I can’t believe how much she has grown and gone through!  Last year for Halloween we had just arrived from Baltimore and we hadn’t even been to Stanford.  We were just beginning to learn about the awfulness of SMA Type 1.  Regardless, we were always determined to have family experiences and make her live life to the fullest.

This year so much has changed, Amanda’s disease has progressed so much, but what hasn’t changed a bit is our desire to do as much as we can with her.  For her first Halloween party on the 27th Amanda was dressed as Minnie Mouse (costume thanks to my good friend Tatiana).  As always, she likes to observe all the other kids as they run around.  Unfortunately, Amanda’s pulse oximeter ran out of batteries (the nurse thought it was plugged and it really wasn’t during the day), but since she was on BiPAP I didn’t worry too much.  But then, the second battery on the Bipap started to run out as well (she had been on BiPAP for most of the day and I guess no one counted how much it had been running on batteries).  That’s when I freaked.  Thankfully we were very close to home so we left the party, came back home, the nurse took her upstairs while I parked the car.  When I walked into her bedroom she was pale and not doing very well.  She recovered after a few minutes.  I guess we learn something everyday…this will most likely never happen to us again.  It is also a reminder of what Dr. Crawford said at John’s Hopkins which was something like these kids can live with machines, but at one point something eventually goes wrong…he was so right.  Anyway, back to Minnie Mouse pictures!


For the actual Halloween day all of Amanda’s cousins from the Cardoze family and Valentina from the Vallarino family came over to Murano.  For this day Amanda was Little Red Riding Hood, costume courtesy of my mom :)

The gang...

With Valentina

There was also some sitting and playing with her switch adapted toys!  She looks SO cute sitting, and she really loves it.  Everything must be pretty interesting to her from that angle because she can’t concentrate much, she keeps looking around the room and smiling :)

Last week we also took her out for lunch twice with us.  Feels great to do normal stuff!!

Out for lunch!

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  1. TiaFlower says:

    Q divertido todo lo q compartes de Amanda!! salvo por el susto pero como dices, algo nuevo se aprende. AME todos los disfraces. BELLA la gordis. Q bendición!

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