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’s Surgery

Sophia had her feeding tube surgery this last tuesday, everything went very well....I was so proud of her, she is my little superstar. Vinny and I stayed with her 24/7 and never left her side....She was so proud and was smiling at all the nurses!!! Last night was our first night home, we were nervous at first but she seems to be tolerating her feeds well...we just need to be careful with her for the next 3 weeks until her g-tube is converted to is very hard because we cant really … [Read more...]

Some great events!!

Sorry I havent updated in a while, Sophia keeps me very busy...We have had some great events lately....Vinnys cousins Beth and Brian and his Aunt Janet ran a wonderful karoke benefit for Sophia's Cure earlier this month, Vinny was able to attend and said the event was a hit!!!!!! I cannot thank them enough!!!! Also my cousing Christine along with some of her collegues through a Happy Hour Funraiser last week for Sophias Cure wich was a wonderful success!!!! Thank you to everyone for all there … [Read more...]

Family Photo Time

Sophia and Vinny and I all had an amazing day last tuesday, we met up with Summerlyn of summerlynphotography to have a family photoshoot, Summer shot Sophia when she was just 7 days old and those pictures are just priceless, she is talented beyond her years and I am so lucky to have found her. After hearing about our Sophia Summer reached out to my family to donate her services to us, I can never thank her enough for the wonderful moments she captures that we can share forever!!!! Everyone … [Read more...]


Hi, My name is Catherine Gaynor and I am starting this Blog for my daughter Sophia, who has Spinal Muscular Atrophy. So far we have been so lucky to keep Sophia Healthy, she started using her Bi-Pap at night to help her breathing and she seems stronger during the day. I am still pumping so she is still able to have my breast milk which is also helping to keep her strong. I am hoping that all the fundraisers do well that we have set up so we can help get the clinical trial going asap!!!! … [Read more...]

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