pre mature




Its starting to look a lot like Christmas

Finally I have a computer! The old one is still not working and I am hoping the hard drive can be saved, I had some stuff on backup, but not all.

Amanda has been better after my last post where she had a respiratory arrest.  We kept her on BiPAP 24/7 for a few days but we also made a few changes and the combination of everything seems to have worked.  She is now taking a formula called Vivonex an amino acid free formula which most SMA kids tolerate better than any other formula (she is still having breast milk, so if anybody knows of possible new donors please let me know), we stopped the fruits which might have caused her to be worse, and her pulmo increased her BiPAP settings.  We have been able to take her off her BiPAP for about 6 hours a day and during those hours she is not having any chocking episodes.

Sunday November 20th we started with the Christmas decorations and we made sure Amanda was a part of it, she was looking when I was putting up the lights and touching everything I was putting up in the tree.  When we were done (for the day) she stayed in the living room observing the tree and listening to everyone chat.  Her godmother brought her super cute Rudolph slippers that she happily wore!


Rudolph slippers!

Holding my Snowman and my Hope Angel

Touching me tree

During the weekend we took Amanda too see Christmas decorations at the Mall.

Back at home observing her tree again…

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