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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
03-04-2005, 07:33 AM
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What a year. Brian came home by ambulance one year ago today in a horrible thunderstorm. So much has changed in a year. At that time, I was just wishing for one easy week with Brian. Now we go for periods of time without problems. He has grown so much and is doing so much better. Off the vent since Sept. I really expected he would be on that vent for much longer. If he can pass the sleep study in 2 weeks, we will get to schedule a decan. date. I'm a nervous wreck about that. He is not a great sleeper and I know the cap at night is going to throw him off.
He is rolling around to get things and sitting up pretty well. He can't push himself up into a sitting position and won't stay on his tummy long enough to push up and learn to crawl. Still worried about him doing those things, but we'll get there. He will grab our noses, etc. if we ask him where they are. He probably understands more than we can tell yet. He is so loud with his PMV that my daughter asked if we could switch him to an HME while she is doing her homework because she can't concentrate. Of course, I said no. He needs to be allowed to make noise. I think he may end up louder than my son David. That will be something. He is such a different baby than he was a year ago. Thanks for letting me ramble.....Sandra
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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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#2
03-04-2005, 09:32 AM
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Congratulations on being home 1 year. When these kids decided to get better it happens fast doesn't it?...Collin is still a horrible sleeper, I swear it has something to do with his overnight feeds....
Good luck with the sleep study and keep us posted...
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Linda - Mom to Collin, former 30wkr, IUGR, Severe BPD, in NICU 9months (decannulated 8/03), g-tube (removed 9/10), Neurodevelopmental Delays (secondary to complex medical history),ADHD-Inattentive Type, Sensory Processing Disorder www.nicumama.com www.purplelotuswebsitedesign.com
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#3
03-04-2005, 11:11 AM
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Sandra, Happy 1-yr anniversary of having Brian home! He really has come such a long way in just one year. I have really enjoyed following his progress and I look forward to hearing about d-day for you all. Best of luck for the year to come.
 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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#4
03-04-2005, 11:49 AM
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Sounds like Brian has come a long way!!! Give him a big hug from us and YOU TOO!!!!!!! You're doing great!!!!!!!!!!
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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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#5
03-04-2005, 12:46 PM
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Congrats on the 1-year anniversary. Â*What a year it has been! Yet, I know you know that the joys of having such a little fighter in the family far outweigh the hardships. Â*Good luck with the big "D".
 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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#6
03-05-2005, 02:11 PM
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Sandra
Congratulations on Brian being home for a year. Its amazing the difference a year can make. Its also a time to reflect on everything YOU have survived through and achieved. I hope you had a wonderful day...  Whitney
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 Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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#7
03-06-2005, 01:55 PM
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Sandra,
What a memorable day! The first year has been rough, but when you start seeing stretches of time where things are "good", it makes it all so worth it. I hope you enjoyed the day. Best of luck with the sleep study. Go Brian! Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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