Archives for August 2009

Summer is ending!!

I cannot believe summer is ending....it went by so fast, with fall approaching I am so scared and worried for my little girl, we have been able to keep her healthy these past 6 months but not sure what the future holds for her and us. We are preparing to enter "Lock Down" mode, I know it has been very hard on some of our family to not be able to see her, and believe me I want to show her off to everyone but it is just so important to keep her healthy we just need to stick to our rules, everytime … [Read more...]

Sophia turning 6 months

I cannot believe my little baby will be six months on thursday 8/27....I remember when we got the diagnosis and the doctor said that 50% of these babies do not live to be six months, I was dreading every day that past knowing that time was slipping away, but now I cherish everyday with her...everyday is a gift, everyday she teaches me something new, everyday she amazes me with her strength and determination....she is definately just like daddy....So on thursday we will be celebrating and … [Read more...]

Sophia’s J- Tube Conversion

We are going to Schneiders children's hospital today for Sophia's conversion from a g-tube to a gj Tube. The reason for this is because SMA babies can still aspirate on the contents of their stomaches. As our doctor put it "It could be a MORBID EVENT!" There has to be a better way of describing the risks involved than MORBID! Like high risk. Anyway we will be able to relax a lil bit after this surgery. Sophia's feedings will now bypass her stomache and be fed directly into her intestines. This … [Read more...]

Sophia in Long Island Press

Divide And Conquer Long Island Families Turn To Controversial Stem Cell Research To Help Cure Their ChildrenWritten by Jaclyn Gallucci on Aug 6th, 2009 and filed under Current Issue, Featured, News, Every weekend, 8-year-old Brianna Bermudez of Bay Shore sits behind a bright yellow table with a bucket of lemonade and a red vase on the corner of West Leila and Manhattan Avenues in South Tampa with her grandmother. Her roadside profits, nearing $4,000, would have sent most kids into early … [Read more...]

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