At our newborn follow up appointments a pediatrician asked if we had any concerns. Our response (it's ok to laugh here...we were completely serious...oh to be new parents) "Our son has gas. It smells and it's loud... like man loud. Is he ok?" Our pediatrician laughed out loud and said, "Yes, I'm ok with him having gas. It happens and sometimes it smells too." Thinking back to that time i wish stinky baby toots were our biggest worries. Soon things changed and our questions suddenly became very serious.
Our sweet Sophie was not growing. She was not getting stronger. Her newborn floppiness never went away. She barely ate. We tried everything and plead for help.
Our next conversation with our pediatrician was very different. There was no laughing. After examining Sophie she told me to sit down. I said," Oh, I'm fine. Standing is fine." "No, sit down please." I sat. She calmly said," It's possible your daughter may have cerebral palsy. Time will tell." We were in shock.
We had a late afternoon appointment and headed to a family birthday dinner after. As family passed our babies around the table there was talk of what position they would play on the soccer field. "Just wait until they are mobile!" "One will go this way and the other will go that way!" We didn't say a word. We fought back tears. Would she be able to walk? Run? Play soccer? We kept our "secret" thinking it was no one 's business. We will not let labels define our daughter. So what if she has cerebral palsy? These thoughts are just as ridiculous now as they were real at the time. Since then Sophie's symptoms continued to manifest. She required an NG feeding tube( if you think being sent home with a newborn ((or two)) is hard, try being sent home with a feeding pump, an iv pole, awful smelling medical food and a vomiting baby)followed by surgery six months later for G tube placement. She began vomiting so often it was hard to keep any nutrients in her. She required an MRI w/sedation, EEGs, many, many labs and trips to specialists we had never heard of. An Endo what? We were referred to specialists who referred us to specialists. It has been a journey that has changed us forever. While we still have no diagnosis... Our sweet Sophie has proven she can thrive with a little extra help. She has the most infectious laugh, and a smile that touches your soul. She currently sees 10 specialists...and it is so worth it. We are very used to doing things ourselves but the cost of traveling now four hours one way to see most of her specialists (an eight-hour drive in one day) has added up. We need to purchase equipment that will help Sophie's muscles strengthen and learn to walk as well as therapy to help Sophie learn to eat without her tube. we are confident our sweet girl can do these things. She just has a few extra hurdles. So help us jump?
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