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Old 01-22-2005, 10:26 PM
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indiemum indiemum is offline
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Hi everyone,

We went in for our routine scope yesterday Friday the 21st, the theme of the day was to make a plan for Indie to have surgery. Our ENT went in for the scope and our brave little soldier just sat and took it, when suddenly there was commotion and all of the docs saw Indie's vocal chords moving. We are still in a state of shock, this was never, ever the outcome we expected. We were told by ENT and Neurology that Indie would never recover because she has other paralysis isuues besides her vocal chords i.e. her tounge and throat as well. We were also told that at age one, the chords were fixed and closed, and at 2 etc, etc. Now at almost 3 years old, her vocal chords are working. I am so confused and shocked and I really am not letting myself believe this. Our doc is sending the tape to some couleges to review but we all saw it as plain as day. I will keep you all posted. The first thing that got the doc's wondering was the quality of her voice, apparently she did not sound like a kid with BVCP anymore. I just needed to share, I'll keep you posted, I am being very guarded right now but we'll see what the next few months bring. Miss you all

Kelly
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Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no you are the reason I bound out of bed. Thank-you for giving me life!


See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
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  #2  
Old 01-23-2005, 07:09 AM
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cariaad cariaad is offline
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Wow, it sounds like good news, do keep us posted! 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
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Old 01-23-2005, 07:45 AM
Carriestockmal Carriestockmal is offline
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that is wonderful. I understand you wanting to be guarded. Let us know what comes next!
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Mom to Jack, born with a giant omphalocele on 6/30/02 at 32 weeks. Trached 12/23/02 due to secondary pulmonary hypertension. Decannulated 6/2/05! Strong, strong little man!!
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Old 01-23-2005, 08:01 AM
Barb Barb is offline
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Kelly! That is so amazing. Wow, I can't imagine what the docs were thinking!
I totally understand being guarded, but you can do a little happy dance here!
-Barb
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Mom to Bobby, born 10-03, Beckwith-Weidemann Syndrome, trached December 03 due to macroglossia (enlarged tongue) causing upper airway obstruction. Also Mom to Audrey (13) Maddy (11) and Billy (9). Bobby was DECANNULATED 8-17-04 (8months and 1 day with the trach).
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Old 01-23-2005, 01:35 PM
Momi2AntnJadyn Momi2AntnJadyn is offline
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Wow, that's great news!
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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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Old 01-23-2005, 03:59 PM
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Colin's mom Colin's mom is offline
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Kelly,

Thats amazing! Oh my gosh, I'm so happy for y'all!! I was just thinking the other day and wondering how Indie was doing. What an awesome answer to my question. Please update us on what comes next!

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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Old 01-24-2005, 09:07 AM
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Melisande Melisande is offline
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Keep us posted! How exciting!
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad!

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Old 01-24-2005, 09:20 AM
Stefan & Jennifer Stefan & Jennifer is offline
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That's very good news...hopefully it'll get even better!
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Jakob, born Dec 02, Pfeiffer Syndrome, trached at 5 wks age due to mid-face hypoplasia, cranial vaultx2, monobloc, mid-face distraction, g-tube, pyloric stenosis, nissen, nasal stents, VP shunt, tonsils, adenoids, uvula all removed, tongue suspension, future pilot!!
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Old 01-24-2005, 09:37 AM
lyshae lyshae is offline
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Wow what a way to start off 2005!!! Â*I hope this year continues to bring you great news!! Â*My son was also born with his vocal cords paralyzed (BVCP) (June 2003) our ENT doc told us that if his cords didn't start moving within the first year then they would probably never move on their own. Â*Well to our surprise at his last scope (July 2004) his vocal cords were moving perfectly!! Â*He still has excessive scar tissue in his airway but possible surgery is in the talks for this summer with decannulation being the next step!! Â*Good luck to you. Â*Please keep us posted.

Lyshae
Mom to Brianna (7) and Brandin-BVCP (resolved July '03), G-tube fed
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Mom to Brianna (8) and Brandin (3): BVCP (resolved 07/04), Pierre Robin Sequence (small jaw), G-tube
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  #10  
Old 01-24-2005, 02:37 PM
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Thats just wonderful!! I am so very happy for you guys!!
leigh
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