Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
Matt and I wanted to take the opportunity to share with you a little about our sweet daughter Sydney. Two weeks after she was born, we were told that Sydney has a duplication on her 2p chromosome. Specifically, a duplication of the medial branch of the chromosome 2p14-22.2. This is a new or "de novo" duplication meaning Matt and I did not genetically pass this to her. Sydney is the only person on record with this specific duplication. The genetics team could not tell us much about what this means for Sydney or how it would manifest as there are not many cases of general 2p duplications.We were told there is a possibility she will face challenges and global delays however physical, speech and occupational therapy would help her with these challenges.She is currently in feeding and physical therapy that have greatly helped her.
Since her birth she has also been diagnosed with epilepsy, macrocephaly, Pierre Robins Syndrome and Polymicrogyria. We were able to get her seizures under control with medication and she is going to have her cleft palate closed soon. She also has trouble feeding and swollowing so she has a feeding tube, we call it a gtube. A gtube is a surgically placed device to give direct access to her stomach. This helps her get the food and nutrients she needs to grow since she can't take it all by mouth. Sydney has been through more medical testing and hospital visits in her first year of life than most people have in their whole life. She is a trooper. She is also a sweet, laid back little baby who loves to be held and cuddled. Her laugh is infectious and we love her to pieces. Her recent favorite toys are bright colored slinkies. Hadley brought one home from school and Sydney loved it. We have since bought her a whole box of bright colored slinkies. ❤️❤️❤️
We as a family plan to face her challenges with the best care and lots of love. There are difficult days and weeks but we are blessed with a wonderful support system of family and friends. Additionally, the doctors, nurses and therapists we have had contact with have been nothing but helpful and supportive. None of them have put limitations on what Sydney will be able to do and for that we are thankful. We will share Sydney's journey and updates with you. Please feel free to ask us any questions.