Tonya - posted on 11/15/2009 ( 65 moms have responded )
Hello! My name is Tonya and I am the mother of a beautiful little girl named Elly. She is 20 months old and has had a tracheostomy since 3 weeks of age. Elly was born 4 weeks early (36 weeks) with a small chin and a normal size tongue, as well as other issues. She did not have control of her tongue and would block her air with it causing breathing difficulties. Although Elly has had many tests, her doctors have not been able to come up with a specific diagonsis or syndrome. At this point in time, she is unable to swallow and has a feeding tube as well as the trach. I set this community up, in hopes to find other mothers going through similar situations as mine and I would love to hear your story. Please feel free to ask the other members of this community or myself any questions or for advice. If you need to use this community as a sounding board just to get things off your chest about the frustrations you feel towards doctors, hospitals, family members, or people who just don't understand what you are going through, please be my guest. After all, we all know how difficult and stressful life can be. I hope that we are able to help each other through this time in ours lives. God Bless and best wishes to all!