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Old 04-26-2004, 11:09 PM
J&Jsmomee J&Jsmomee is offline
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I just wanted to share with a great group of people who would understand what this really means for us. As you know Joel was decannulated in January. Well, he's continued to hav his g-tube for night time feeds, but we've gradually worked our way from 16 oz a night to 7 oz. Joel's finally on the very bottom of the growth chart, so the decrease has been pretty successful so far. Well, today we went in to see our pediatrician (who is definitely the best doctor in the world BTW) and after discussing Joel's nutrition she said "Let's just take him off." I asked "take him off what?" She said "the nightime feeds." I was so surprised. I was thinking but he has 7 oz more to go. That's 210 calories!! Anyway, she said that we'd give it a 2 week trial. Anyway, what's so special about tonight is that my babe is in his bed hooked up to nothing!!! There was no feeding bag to prime, no extension tube to hook up, no pulse ox to struggle to put on his chubby little toes (we only kept him on the pulse ox because he kept getting his tube wrapped around his neck and for when he's sick) Anyway, I thought that was pretty cool! It's almost like the marathon we've been running for Joel's entire life, ended in a quick, short sprint. Anyway, thanks for letting me share and I'd love to have some good fatty recipe ideas for a picky 2 year who needs to get 210 calories from somewhere! lol
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Lisa- mom of John Patrick age 9 and formerly trached Joel age 4- DECANNULATED JANUARY 25, 2004!!!

Foster mom to Sierra born July 16, 2005- CHARGE syndrome, grade IV kidney reflux, severe hearing loss, trach & gtube for laryngeal cleft and chronic aspiration, gorgeous blue eyes
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Old 04-27-2004, 01:29 AM
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sandra sandra is offline
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Thanks for sharing. That is so wonderful. What a special sight....Joel without any tubes! I plan on seeing that one day!!! Congrats!!!!!!!!!!!!!!
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.


B & C are surviving triplets. Brooke survived for 1 month.
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Old 04-27-2004, 06:54 AM
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Jacob's Mom Jacob's Mom is offline
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Lisa, That is so wonderful and I am very happy for you all!!

Amanda
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube.

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Old 04-27-2004, 07:01 AM
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nicksmom nicksmom is offline
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I am sitting here laughing out loud. Â*Nick has been decannulated since June but still g-tube fed at night. Â*I just walked in to check on him (it's 7:30am) and his tubing is wrapped around his neck and he's pulling it through his little toes saying "all done" Â*

I am very happy for you, I hope it all continues to go well. Â*Go Joel, we'll keep our fingers crossed.

Carrie
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Our little miracle, Nicholas Scott born 08/09/02; CHARGE Syndrome, bilateral cleft lip/palate, congenital heart disease, trach and g-tube, hearing aids. Decanulated!
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Old 04-27-2004, 11:14 AM
abby abby is offline
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That is a great sight for sure!! I cant wait for the day im not tripping over wires and tubing!!
Ps- carrie, I love the story of nick saying all done with the gtube wrapped around him!!
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Abby, mom to Jared (28wk surviving twin), BPD,Bronchomalacia, vent dependent until8/04,Grade 2 subglottic stenosis, gtube, our miracle child! (Decannulated 3/05)
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Old 04-27-2004, 11:18 AM
christyw christyw is offline
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Lisa,

I loved what you said about finishing this lifetime marathon (for Joel) in a quick, short sprint. I know how nice it is to "lose tubes!" You're pretty much out of them now...once the gtube is out...you're tube-free! yay!.


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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Old 04-27-2004, 11:53 AM
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I am so happy for you... I can not contemplate waking up without Frank having cords and tubes wrapped around him. His favorite thing is to undo the feeding tube at the connection so that the food can go all over his bed. Guess they are all characters.

Misty
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Old 04-27-2004, 09:08 PM
Carriestockmal Carriestockmal is offline
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That is so wonderful. Celebrate with some wine!!!
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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 04-28-2004, 05:37 AM
j's mom j's mom is offline
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Woo Hoo! Way to go, Joel! I know you must be so happy, Lisa.
Tracy
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Mom to Julianna, born 10-4-02 with vocal cord paralysis; a little sweet pea! Decannulated 11-12-06!
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