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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. |
03-08-2002, 10:24 PM
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Senior Member
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Join Date: Mar 2002
Location: Fort Collins CO
Posts: 1,540
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I've been reading things on this message board for awhile but have posted only once. I guess I'm kinda reseved. The info that I've read though has helped me alot. We live out in the middle of Kansas and my daughter has a rare syndrome called Dandy-Walker syndrome. The Dr.'s even had to go look it up when she was diagnosed at 2 weeks old. After some very scarey time and 4 codes they finally placed her trach when she was 4 months old. She also has a cleft palate,heart defects,kidney defects,congenital hip. She eats everything by g-tube and had a fundoplication. Even though she has all of these things, she is very mobile and what a fighter!!! She gets all over the place faster that you can say boo. I guess I just wanted to share a little about my angel. I also want to say how nice it has been to know that other people go through the same things and I have somewhere to look for advice.
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http://mamazgirlz.blogspot.com/
Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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03-12-2002, 05:55 AM
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Administrator
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Join Date: Feb 2002
Location: Grafton, MA
Posts: 4,176
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Thanks for the introduction. So glad you have found this board helpful. If you are interested in adding Celia to Aaron's Page, just email me at cbissell@twinenterprises.com, another great way to network.
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Cindy - Mom to Aaron (age 19), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 19), spastic quad CP, moderate MR, seizure disorder; Anthony (age 19), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 6) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.
Home Page: http://www.bissells.com
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