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#1
01-02-2008, 05:25 AM
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New member...
...I have been visiting this site since March 20th of this year when our son received his trach. The respitory therapist recommended it while we were in training on how to care for the trach and I am glad she did because it is very informative.
Brian was 12, he turned 13 in December, when he recieved it. He has a rare disorder that was named after his case study at The National Institute of Health in December of 1999. His skeletol system is fragile, 30 fractures, mostly in his long bones and especially in his left leg. He has rods in both femurs and his left tibia. He also has tumors that are centered behind his nose, in his chin and jaws that require periodic surgeries to reduce their size when they begin to disfigure his face. They named the disorder gnathodiaphyseal dysplasia (GDD). It was during a surgery in March to reduce the tumor under his tongue that resulted in the tracheostomy. The tumor had pushed his tongue back into his throat restricting his airway and resulting in severe sleep apnia. The surgery failed as they could not pull his tongue forward to it's normal position. It has been quite an adjustment for us but we all have adjusted to it and consider it a blessing because Brian can now sleep, and eat, better than ever. My wife, Carol, and I are glad to join this forum and look forward to getting to know everyone. We also have a healthy 18 year old daughter, Sarah, who has been a big help to us during this transition. Doug 
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#2
01-02-2008, 08:44 AM
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Welcome Doug and family. I'm glad you have introduced yourself and can't wait to hear from you more often. 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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#3
01-02-2008, 02:19 PM
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Welcome to the boards!!!
Kris 
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Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses!  !!
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#4
01-02-2008, 05:20 PM
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welcome
Hi,
I am a new member here as well and can tell you it is a great place to be. We felt the same way about the trach, it made life so much better for our daughter. She went from not being able to sit and eat to doing that and so much more. Amanda's mom, deb.
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#5
01-03-2008, 02:24 AM
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Welcome Doug - and welcome Deb! It's nice to have you here, though I realise this is a club you probably would prefer not to have to join. This place is the best for support, advice and just a laugh.
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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#7
01-04-2008, 09:51 AM
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Just wanted to say welcome as well. I love this board and could not have gotten through our first year without it!
I hope you find the support you need here as well! -Christy
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Christy, Mom to Murphy, (8), Harlie (6) and Cooper (4). Harlie has Goldenhar Syndrome & VACTERL Assoc. Missing left ear/canal, left eye anomalies, g-tube & trached due to underdeveloped jaw, 5 open  surgeries, three jaw reconstructions (still trached, though), spinal fusion surgery, 30 surgeries total so far. www.lifesinceharlie.blogspot.com [IMG]  [/IMG]
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