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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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  #11  
Old 09-02-2009, 07:23 AM
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cherienz cherienz is offline
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Join Date: Feb 2009
Location: New Zealand
Posts: 203
Smile Willow Tree

I really admire you for your passion and dedication to start this up. I am in New Zealand but would totally be in to trying to give the
''stones" a launch. After 2 years in the PICU, and even 3 .5 years being home, all the same Consultant DRS are the same, but the registrars could really learn from your video and letter!! I still have many contacts. Our main resp dr suggested I start a support group recently (now my headspace is better - only taken 5 years!!). We just don't have any thing for the people like the trache group and I have been thinking about this. If you want to stick to US I TOTALLY understand. And if there is anything I can offer from down under let me know.

Can I also ask, on your Willow Tree foundation site, there is a letter from Carrie (assume a friend) with son Jack who has a giant Ompalocele and trache and PSH. My boy has all of these and some which is called Pentalogy of Cantrell, but I never find anyone who has this combo. If she wants to contact me, can you please share my details.
Thanks and great job on getting this happening. I really do want to help so if you think there is something I can do let me know.
Cherie
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Cherie
Mum to twins (Mitchell and Holly) born 10 Dec 2003. Mitchell's dx is Pentalogy of Cantrells. Mitchell has ahad a trache since January 2005, NG fed, ventilated on HT-50 for 6 years, now on CPap overnight. DX includes: giant omphalocele, ASD, GORD, CLD, cleft-sternum, sub-cutaneous IVC and right atrium, muscular defect of central diaphragm, Pulmonary Hypertension, GDD, Pulmonary Stenosis, spinal cord syrinx.
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  #12  
Old 09-03-2009, 05:11 PM
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MRSJOH MRSJOH is offline
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you are doing a great job!! I am working on my donation, having pp login probs , but I will figure it out eventually!
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Jasper, Nov 25, 2008 - Feb 23, 2010
loved and missed
born 25 Nov 2008, @40.5 weeks
Heart baby (DORV, VSD, PA, D-Tran)BI-v repair 10/09
craniosynostosis, trach 2/09 severe laryngealmalaysia, kidney reflux, gtube 2/09, nissen fundo 6/09

www.jaspersheart.com
www.babyblogs.com/jasper
Reece Aug 3, 2010 healthy
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