Just another Sunday…

Woke up this morning to my daughter Sophia playing in her crib and big smiles all around. I can’t believe that she will be a year old in two weeks and boy the time flies by! Sophia is going to see a new GI doctor in a week and hope that he will have some resolution to her gas reflux. My mother is thinking of throwing a birthday party for Sophia with the theme of Minnie Mouse…. I think that would be too cute and hope that Sophia enjoys her first taste of birthday cake. The holiday weekend is filled with season-ending pool parties to end the 2012 summer and beware: DUI checkpoints are all around the valley! I’m excited for the new Halloween stuff that is coming out this year. I plan to decorate more than the previous years and thank you Pinterest and Michael’s for the great project ideas to give me a head start. Sundays are meant for relaxation and catching up with what has taken place over the week…. hmm that just gave me my next topic to blog about…. hope I make it interesting 🙂

My lil fighter

This is my first time writing a blog. I have to say, it’s better than the diary days I had when I was a teenager, plus this gives me a way to connect with others with the same chromosome disorder as my daughter Sophia. Sophia has a chromosome 6 deletion, there are only 400 cases or so in the world of children and adults that have this disorder. Not all cases are the same such as Down’s syndrome, which makes it difficult to know what challenges are ahead in Sophia’s future. I had a difficult pregnancy and was diagnosed with IUGR(intrauterine growth restriction). Almost instantly, the doctors were concerned with her dismorphic features, respiratory distress, and cleft palate inside her mouth. Chromosome testing was sent off and on September 20, 2011 was the hardest day of my life when we found out that Sophia had a Chromosome 6 deletion. The prognosis: growth, developmental and speech delays, seizures, hypotonia (low muscle tone), microcephaly(small head), etc the list goes on. Along this journey, we’ve also learned that Sophia has vision problems, and a severe hearing loss that a hearing test has confirmed, and needs hearing aids that cost an arm and leg! Sophia was hospitalized for a month after birth. She requires the type of care that is given by nurses to their patients 24 hours a day. I’ve been in healthcare for 10 years, yet it’s very different when it’s your child that you are ensuring they receive the proper care. This has been very difficult for my husband and I, but we are strong parents and can deal with the challenges that we are faced with daily with Sophia’s condition. My husband is a stay-at-home father due to Sophia’s condition and she is g-tube fed. Can you imagine taking her to daycare and expecting them to know how to feed you child?! I didn’t believe in hiring a nurse to care for her because I knew the strength we have as a family to take care of our daughter and make her life as normal as possible. Our Sophia will have her first birthday this September and I’m so excited for her to celebrate it. She has had a rough start in life, she doesn’t sit without assistance and cannot walk yet. She is behind for her age, and a great state program is helping her achieve her goals. I’m hoping to connect with other families that have the same situation as ours.