pre mature

Category Archive: Difficult thoughts

Apr
02
2012

PARTY GIRL…AND SMA UPDATES

Ready to go shopping!

Over the last few days Amanda has attended two birthday parties.  She gets invited to lots and lots of birthday parties and as much as I would love to take her everywhere we still need to be cautious with public places and sick people around her, and we also need to think about how accessible …

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Mar
20
2012

SOME GOOD AND SOME BAD

Right before going to the social area...

Since last post there has been a lot going on, good and bad,  and I have been very very busy and most of all tired.  Amanda’s nanny had knee surgery and will take a month and a half off; it’s only been 2 weeks and I am already missing her and her help so much!  …

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Nov
17
2011

A Bad Day

Yesterday in the ER

Yesterday Amanda had yet another cardiac and respiratory arrest.  This time it seemed it took us longer to stabilize her.  After she was ok, on Bipap and sleeping from exhaustion we took her to the ER for blood work and a chest X-ray.  All the exams turned out good, her lungs are clear, her blood …

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Oct
18
2011

One scary day plus one frustrating day, but moving forward.

Yuck!

Don’t be scared by the title, Amanda is doing OK now and I want to start with the good stuff.  Last week was my mother’s birthday and the girls of the family celebrated with a lunch at my sister in law’s apartment.  The girls hung out together, we sang my mom happy birthday and we …

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May
20
2011

Good, but difficult week

Thank you Ana Rubi for this book!

There have been a lot exciting things going on lately; Amanda’s special stroller is almost here, Tuesday we had the Shop to End SMA event at Hush, Amanda has been getting stimulation therapy, we have new books, and we decided to move to a different neighborhood in hopes that we can take Amanda for walks. …

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