|
I have a daughter who will be turning 10 in March. She was born with a rare craniofacial syndrome that has left her legally blind, hearing impaired, frontal bossing, small beak like nose, a minimal amount of teeth. She has a rare form of dwarfism, and is now 37pounds and 37 inches tall. She is g-tube fed and has a trach. She is on a ventilator 12 to 14 hours a day. She is smart, in a regular 3rd grad class with paralell programs to facilitate her impairments for reading and math. For ten years, she has experienced many medical challenges, however many happy times too. I am uncertain on the future. Has anyone experienced parenting a child with this syndrome or something similar. She can do many things, dance, cheerleading, brownies (to a point), and wants to do as much as she can. It just gets exhausting, keeping up the the medical, and working hard for a social life for her. She also has a normally developing sister who will be 12 soon. I am married, but unfortunately for both of us, we are more like business partners. We are in the business of keeping her alive, as well as our other daughter happy, smart and growing. There's not much room, or time for anything else. Just wondering if there is anyone out there with ideas, comments, experiences, etc. Thanks ↓
|
