I would like to ask if there is anyone out there that has a child withHallermen's - Streif syndromen. My daughter Michelle has been afflicated with this crainiofaciol syndrome for almost ten years. She has major differences in her physical demeanor. Born with cataracts, diagnosed with drarfims, lung, heart, gi troubles, she has done well. Here is my question, anyboydy else out there dealing with a child doing well, with all these problems, and I do mean that it is never may I say never even, calm. or without problems/
My daugher, Michelle is trached, g=tube fed, legally blind, hearing impaired, using a conductive hearing aid, due to a tumor 2 years ago. Here is the good new, she walks, she talks and is a happy 9 year old. But I, as her Mom, is just tired, What do I do any more,
I love her so much, however, it is crazy. I can hardly take any care or attention to myolder daugter or my husband. I just don't know who to talk to anymore. Is there anyone out there that can give me some perpescive??? ↓
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| Name: rosie7 | Date: Jan 24th, 2007 3:47 AM |
| my child does not have that syndrome although i am a firm believer that you can have better perspective and clearer mind if you get a break every once in awhile. have a family member or a trusted sitter come over and take your hubby out to a movie , or your older daughter to the mall. short absences may help rejuvenate you and will give you a chance to spend some relaxing time with some of the other loved ones in your life. i hope this helps. ↑ |
| Name: Bluebird | Date: Feb 8th, 2007 2:18 AM |
| I am not sure what the name is for my niece's disorder, but she has things bad also. She was born dead, born 2 months early, revived after 2 long hours in another state from her birth state. Had water on the brain, born with tumors in her eyes and brain. She has been in and out of the hospitals all her life replacing shunts, adjusting meds, etc. She is amazingly strong, never cries and loves to get mouthy! She is blind in one eye and almost blind in the other. Goes to school (special ed) when she can. She is about 5'6" tall, large busted, dark short hair (because it is always getting shaved), brown eyes, smiling happy 14 year old girl! She does not know however, that her mind is 9 years old. She has been 9 years old for about 4 years now. Her health is on again, off again. Right now it is off again, she could go at any second, my sister stays as strong as she can. Your daughter sounds amazing and I bet she is cute! ↑ |
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