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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
11-29-2004, 10:14 PM
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Hi everyone,
My name is Annette and my 18 month old daughter Ashley had her trach put in March 5, 2004. She was born with a very rare genetic condition called Pfeiffer syndrome type 2 which includes cloverleaf skull, protruding eyes, sunken-in mid face, sleeve trachea, hearing loss, hign arched palate, fixed elbows and broad thumbs. Ash also has a g-tube, hydrocephalus, chiari malformation, GERD, and developmental delay. She has gone thru 7 surgeries so far and will have many more in her lifetime to reconstruct her face and skull. Her trach will be in until she is 4 or 5. Ashley is the sweetest little girl out there. All I need to see is her beautiful smile and it just brightens my whole day. Ashley truly is a fighter and I cherish each and every day with her. Annette
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Annette, mom to Ashley born May 13/03, pfeiffer syndrome type 2, cloverleaf skull, g-tube, fundo, shunt, dev. delay, seizures, untreatable central apnea. Decanned September 3/09!!! Also mom to Mitchell born Feb 27/08, perfectly healthy. They've made my life complete.   
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