Archives for December 2011

Merry Christmas…..

Sophia has been sick for a while now and last week we found out she has Serratia, pseudomonas, and Staph......again we say "Thank God for her Trach" all this has been manageable at home, and she has been in good spirits. Thank you for all the prayers for our sweet girl. Despite Sophia's Sickies we had a wonderful Christmas...This year Sophia really "Got it" and understood all about Santa and all the christmas magic....We made cookies for santa on Christmas eve and we put the kids in their … [Read more...]

Making Strides in our “little corner” of the Spinal Muscular Atrophy (SMA) WORLD

We were deeply saddened by the loss of Diana Casares this past week. Diana was almost two years old and had SMA Type 1 like Sophia. the Casares's lived very close to us here in NY, and our families had become close friends ....Though Diana was not here very long, she made a huge difference to the SMA Community here on Long Island. Since Sophia's diagnosis Vinny and I struggled to find a local hospital that would be "on board" with the SMA protocol......over the years we heard horror stories … [Read more...]

Christmas Magic…………

I love Christmas....I love the decorating, the music the baking.......and as a child one of my favorite parts about Christmas season was going to see Santa!!!! I never thought this would be possible with Sophia...until yesterday....another blessing about having her Trach.....We decided last minute to head on over to Hicks Nursery in Westbury, I heard they had a Santa with reindeer and an animated Christmas walk through. ┬áSo I dressed Sophia in her special "going to meet Santa outfit" and we all … [Read more...]

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