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#1
08-30-2008, 03:03 PM
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Hello!!
My name is Leeanna. My daughter is 13 months old and was diagnosed with hypophophatasia( a rare bone disease) in September of 2007. In January of this year she got pnemonia and spent a month and a half in PICU here at Arkansas Children's Hospital, intubated and on a vent. She failed 2 attempts coming off the vent and now is trached and vent dependent. Her disease causes her bones to be very fragile, her ribs don't even show up chest x-rays so she can't support her ownself to breath without help from the vent. Currently she is on a servo 300 vent the doctors have been turning settings down hoping to get her on the home vent(LTV 1000), they put her on it a couple of months ago and she failed but since then she has progressed alot and is doing a whole lot better.
 
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#2
08-30-2008, 05:28 PM
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Hi and welcome. My son isn't on a vent, but has had a trach for 4 years and has been on continuous O2. You have come to the right place for support and advice, looking forward to getting to know you.
Julie
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#3
08-30-2008, 10:23 PM
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Welcome, this is a great group of parents and of people who are trached. While no one has the same circumstances there is usually someone who can answer questions for you. Can't wait to meet you further. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#4
08-31-2008, 01:49 AM
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Welcome, feel free to ask questions or anything else
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Dawn Mom to Geoffrey born November 13, 2007 at 23 weeks,217 days in NICU, PDA, severe BPD & CLD, Pulmonary hypertension, Left Vocal Cord Paralyzed, Pectus Carinatum, Esophageal Achalasia, Plus more minor DX's.Vent Free after 19mths,Trached and Mic-key button on 3/21/08,Decanulated 4/29/2010, Krista 21, Zoee 9,MIL to Antonio 27,Grandma to Mia 3  
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#6
09-02-2008, 05:54 PM
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Hi Leeanna and welcome! Please feel free to ask away and/or vent when needed!
Hope
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custodial g-ma to Shelby ~~ premie born 9/28/05 with choanal atresia, trached 12/28/05 -- sub-glottic stenosis due to repeated intubations, decanned 3/10/08  http://s307.photobucket.com/albums/n...t=4acb482c.pbw
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#8
09-16-2008, 10:00 AM
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Hello Leeanna and welcome to the forum...I am also new here and I hope to chat with you soon!
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Searching for quality incontinence products for my five year old son.
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#9
09-16-2008, 10:04 AM
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Hello and nice to meet you.
Lisa
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 Lisa Mom to Sloan, and fraternal twins Taiga and Gage. http://myversionofmylife.blogspot.com
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#10
09-16-2008, 11:21 AM
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Welcome to the board!!
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps https://www.babiesonline.com/babies/c/cedric1/
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