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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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#1
05-19-2004, 12:42 PM
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I know a majority of the people on the board aren't able to attend the conference, but I wanted to share with you the numbers for attendance as of today:
22 families (States represented: California, Minnesota, Arizona, Georgia, Ohio, Arkansas, Wisconsin, Illinois, Missouri , Kansas and Massachusetts). 20 RNs/other professionals (States represented: Arizona, Oregon, Arkansas, Missouri, Utah, Texas, South Dakota, Illinois and Ohio). Totals: 64 adults Â* Â* Â* Â* Â* 20 kids with trachs (or former trachs) Â* Â* Â* Â* Â* 17 siblings I'm looking foward to meeting everyone and, just a reminder, we'll have a website available after the conference that will have pictures for all to see.  Ann
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Ann-mom to Jack- 14 yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy; also mom to Hilary (22), Mary (19) and Eric (10) Jack's Journey and Then Some TouchStones of Compassionate Care The Willow Tree Foundation   “Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true” 
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#2
05-19-2004, 06:13 PM
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I really wished we could make it also. It doesn't look like we will be out of the hospital for awhile yet.
Mason had his first trach change today. Jarita and I will take over doing them from here on out. We also still have to get our CPR calsses done, and we are working on our in home nurse yet. They won't release us until the nurse is in place. We are getting along well so far. Mason is just as happy as a baby can be. It just amazes me how he is accepting all of this. He even does a real good job of coughing the stuff out of his tube. Have a great time at the conference. Doug, Jarita, & Mason
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Doug, father of Mason. Hemangeoma in Trachea. Had Tracheostomy 5-14-2004 at 4 months of age. Decanned 8-19-05. Closure Surgery 5-5-06.
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#3
05-19-2004, 08:39 PM
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Ann,
Thanks for posting the numbers. I was curious about that, and I'm glad that there is going to be such a good turnout. I really can't believe the date is so quickly approaching! Christy
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Gaithy's Mom:28wk preemie born 8/2000 at 1 LB, IUGR, SGA, ROP, BPD, g-tube/nissen. Trached 4-2001 and LTV950 ventilator until 5-2003. Decannulated 8-3-04
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#4
05-19-2004, 10:21 PM
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That's great, I can't wait to see all that are attending!
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Amanda Mom to: Anthony (5 yrs. old) and Jadyn (2 yrs. old) Jadyn's page on tracheostomy.com
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#5
05-19-2004, 10:53 PM
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I wish that we could attend, but I have to work. Stephen is going out of town for work the end of June. So I am using some of my vacation time so that I can care for Frank.
Misty
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#6
05-20-2004, 01:58 PM
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I just realized today that the conference is only two weeks away and I was wondering how many people were coming and then, ta da, there was your post! Thanks Ann.
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Anne, mom to Evan, born 1/18/01, preemie, TEF/EA repaired, subglottic stenosis, laryngeal web, trach at 6 wks, LTP 8/02, decannulated 5/17/03 , Mic-Key button removed 7/2/04. http://www.tracheostomy.com/trachkids/kids11/evan http://anne-evan.blogspot.com
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#7
05-20-2004, 11:57 PM
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Wish we were going too. With all of our trips to Cincinnatti, it just didn't seem to be in the budget. I'm so excited for all of you that are going! I just know that it will be amazing. I can't wait to hear all the stories!
Lesley
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Lesley, mom to Colin born 11-4-02. Trached at 10 days old Tracheomalacia and vocal cord paralysis. DECANNULATED May 29, 2004: little brother Fintan born 1-29-07 also trached at 10 days old due to billateral vocal cord paralysis, Griffin born 3-8-10 ALSO trached due to BVCP 
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#8
05-23-2004, 07:42 AM
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I am so sad we can't attend, but there just isn't any way this year, finances are too tight for even a long weekend.
 Maybe by the next one we will be in a better position. I hope you all have tons of fun and PLEASE take lots of pictures and post somewhere so those of us who are homebound can share. Deb
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Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG]
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