|

| 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. |

03-14-2011, 08:12 AM
|
|
Member
|
|
Join Date: Aug 2009
Location: Winnipeg, Manitoba
Posts: 495
|
|
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. 
__________________
 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.
|

03-14-2011, 08:57 AM
|
 |
Senior Member
|
|
Join Date: Dec 2004
Location: England
Posts: 10,932
|
|
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 
__________________
 
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
|

03-14-2011, 09:03 AM
|
 |
Senior Member
|
|
Join Date: Jun 2005
Location: Minnesota
Posts: 4,727
|
|
agreed 
__________________
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
|

03-14-2011, 06:34 PM
|
 |
Member
|
|
Join Date: Nov 2010
Location: Australia
Posts: 596
|
|
ditto love you all 
__________________

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
|

03-14-2011, 07:34 PM
|
 |
Senior Member
|
|
Join Date: Dec 2009
Location: galt california
Posts: 1,260
|
|
|

03-15-2011, 12:20 AM
|
 |
Member
|
|
Join Date: Jul 2009
Location: California
Posts: 232
|
|
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.
__________________
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.
|

03-15-2011, 01:08 AM
|
 |
Member
|
|
Join Date: Feb 2009
Location: Corvallis, Oregon
Posts: 266
|
|
Quote:
Originally Posted by Melissa
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!
__________________
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
|

03-16-2011, 12:36 PM
|
|
Member
|
|
Join Date: Jun 2010
Location: Canada
Posts: 101
|
|
Just an amazing bunch of people and it helps sooooo much!
|
| Thread Tools |
|
|
| Display Modes |
Linear Mode
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -5. The time now is 08:42 AM.
|