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Old 01-15-2009, 03:18 PM
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debvec debvec is offline
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Default we head to cinci on the 22nd
yes, somehow we managed to pick the one weekend with absolutely no football on...how is that possible. Of course we are in mourning due to the Giants lack of any offense or defense in their game against Philly...it is just so sad. Anyway, we did get clearance for the Wii, I guess some of the activity rooms have it but Guest Services was not sure which ones and Child Life wasn't either...but for future reference for you all, you need to have your unit inspected...that sounds a bit racey, by a technician at the hospital but then you can just hook one up in your room. I will let you know how it goes, that is if we can pry it from my son's hands, he is staying with my sister. So, Amanda is scheduled for Friday morning and we should be up on b5west for a few days after. Dr. Cotton is doing an open procedure to put two stitches in the right cord to hold it open a bit to give us a bit more airway. I am nervous as we have never touched that cord...other than the damage that was done to it at UCLA...yes I am still bitter. I kind of liked leaving one cord alone. We shall see... If anyone is there I would love to meet ya! Come play some Wii games!
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Old 01-15-2009, 03:29 PM
TommysDad TommysDad is offline
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We will likely be on B5W as well. Maybe we will see each other. Tommy is typically in isolation for MRSA, so unfortunately no play mates, be we promise to scrub scrub scrub if we see each other.
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Old 01-15-2009, 03:47 PM
hcs_mom hcs_mom is offline
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We may have a clinic appt on the 23rd. Probably in the AM. Maybe lunch...?
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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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Old 01-15-2009, 04:00 PM
jbromley jbromley is offline
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Good luck with the procedure. You are in great hands. I know how it is on b5west so a wii will help.

Jennifer
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Jennifer
mom to Elizabeth our little miracle and the most loving child I have ever met. Born 5/27/05 33-weeker, trached on 8/20/05 and most recently found out she has bilateral vocal cord paralysis and subglottic stenosis, also has g-tube, VP shunt due to hydrocephalus, tetralogy of fallot-repaired, esophageal atresia-repaired and chronic lung disease.
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Old 01-15-2009, 05:24 PM
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I am not sure what time Amanda is going in, they said it would be a 3 hour procedure. Once we know more I will update. Thanks for the well wishes..you all know how stressful this is.
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Old 01-15-2009, 05:59 PM
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KJKK8437 KJKK8437 is offline
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Quote:
Originally Posted by debvec View Post
yes, somehow we managed to pick the one weekend with absolutely no football on...how is that possible. Of course we are in mourning due to the Giants lack of any offense or defense in their game against Philly...it is just so sad. Anyway, we did get clearance for the Wii, I guess some of the activity rooms have it but Guest Services was not sure which ones and Child Life wasn't either...but for future reference for you all, you need to have your unit inspected...that sounds a bit racey, by a technician at the hospital but then you can just hook one up in your room. I will let you know how it goes, that is if we can pry it from my son's hands, he is staying with my sister. So, Amanda is scheduled for Friday morning and we should be up on b5west for a few days after. Dr. Cotton is doing an open procedure to put two stitches in the right cord to hold it open a bit to give us a bit more airway. I am nervous as we have never touched that cord...other than the damage that was done to it at UCLA...yes I am still bitter. I kind of liked leaving one cord alone. We shall see... If anyone is there I would love to meet ya! Come play some Wii games!

Yes, what happened to Eli anyway? I'm a Philly fan, but I hate seeing Eli have such a rotten day.

Good luck with your trip.
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Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/

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Old 01-15-2009, 06:58 PM
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it is a mystery...Amanda has such a crush on him. she has two eli manning jerseys, one blue one pink and white. we went to Giants training camp this summer as it is in Albany and she got to see him in person. We adopted two kittens for Christmas, a boy and a girl, the boy is named Eli...the girl Marley, they are the cutest little kitties. Anyway, back to Eli, he just couldn't do anything, it was very hard to watch, unless you are a Philly fan, McNabb went to Syracuse so I have a tough time cheering against him, so I now am pulling for Philly...but it was a sad day in my house to say the least.
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Old 01-15-2009, 07:12 PM
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We will be there on the 23rd for Nathan's second double stage LTP. We are not in isolation so we're game for visitors!
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Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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Old 01-15-2009, 08:02 PM
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We will be in Cincinnati from January 19 - 22nd. Sydney is getting another bronch, impedence probe, upper GI, endoscopy....we are keeping our fingers crossed that her reflux results will be improved enough where they are willing to try LTP.
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Old 01-15-2009, 09:10 PM
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Gretchen(Celia's mom) Gretchen(Celia's mom) is offline
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Best of Luck!!!!!!!!!!!!!!!
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Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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