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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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Old 03-14-2011, 08:12 AM
Momoffive Momoffive is offline
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Default One of the reasons you all mean so much to me....

I have been told that I have what people consider a "caregiver" personality. In my adult life, it has always been me in the workplace/family etc. making sure we do what is needed when there is a celebration or a tragedy. For me, it's natural and comfortable and I try to do what I can. When I went back to University in 2005 I thought that being part of a cohort of other adults returning to school, I would find others like me but even there, no one else seemed to take on that role. But here, in this online community, most of us who will never meet in real life, WOW - I am just overwhelmed with the way that help just flows - in other situations before this but right now, in trying to ensure that Mairead, a.k.a. Maleek's mom and the family are safe and find a way to fly out of Japan to a safer place. You're all just amazing and I'm so glad that I found you.
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Monica - mom of Vincent, Jeremy, Joey, Logan (15) and Robin (15) - trached since 11 months, vent (at night only since April '08), Bard button, O2 24/7, primary dx adenovirus causing scarring of lungs - hence, bronchiolitis obliterans.
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Old 03-14-2011, 08:57 AM
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JWorthington JWorthington is offline
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I know just what you mean Monica. i don't think you will find a nicer bunch of people anywhere. Whenever I think of Mairead and the family I just want to cry. It seems like they may finally be getting somewhere - thanks to many people here on this board
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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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Old 03-14-2011, 09:03 AM
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Kate Kate is offline
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agreed
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT!
www.caringbridge.org/mn/mitchelljohncragg

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Old 03-14-2011, 06:34 PM
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glowingpurpleaura glowingpurpleaura is offline
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ditto love you all
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
Mum to an ex 24wk prem now 5 yrs old with Chronic lung disease, choroid web, immobile vocal cords and vision impaired from ROP. Decanned 10th March 2011 , repeat LTR due to body reabsorbing graph April 2013, Re -trached april 2013
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Old 03-14-2011, 07:34 PM
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jamie jamie is offline
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Old 03-15-2011, 12:20 AM
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Melissa Melissa is offline
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I agree that I would be lost without this group. The support here is astounding and the knowledge is second to none. I have had doctors tell me how awesome I am and I have to immediately fess up that I learned it all here from other moms and dads and caregivers who have shared. Thank God for all of you.

I've been so moved by all that has been done for Maleek's family and I pray that they are able to make it to a safe land. You are all so amazing and have come together like a finely tuned machine that had a few practice runs and was 'at the ready' for an emergency like this. Hats off to each and every one of you who offered information and support in an instant while I could only sit frozen in tears reading the screen. It's true that there are those that do and those that wish they were doing. I applaud you all and I'm happy to be among you all.
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Melissa~Wife to one fabulous husband, Pat and mother of four beautiful kids, Sarah-24, Alyson-22 (spastic quadriplegic CP, microcephaly, epilepsy, asthma, scoliosis, developmental delays, tracheostomy 4/09, g-tube 4/09), Eric-19, and Kyle-16. A fine group of young'ns if I say so myself! With every day comes a new challenge, I pray I'll be around to face them all.
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Old 03-15-2011, 01:08 AM
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kharmasmama kharmasmama is offline
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Quote:
Originally Posted by Melissa View Post
The support here is astounding and the knowledge is second to none. I have had doctors tell me how awesome I am and I have to immediately fess up that I learned it all here from other moms and dads and caregivers who have shared. Thank God for all of you.
Same here, sometimes I don't even know where to start, where I stand on things, or what questions to ask until I pop on here. These women (and men!) are all a wealth of information and support, which I will eternally be grateful for!
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Danielle, Mom to Kharma Rose Summers, born full term 6/3/08 with vocal cord paralysis and agenesis of the corpus callosum, Trached 6/12/08.

Kharma's blog
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Old 03-16-2011, 12:36 PM
blessedwithtwins blessedwithtwins is offline
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Just an amazing bunch of people and it helps sooooo much!
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