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  #11  
Old 06-03-2012, 03:20 PM
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kjersta81 kjersta81 is offline
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congrats!!! such a happy time i'm sure!!
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Mom to Hunter, born full term 8/30/10, grade 3 subglottic stenosis, otherwise healthy! Trached 2/16/11. Decanned 8/3/2012!!!!! http://raisinghunter.blogspot.com
~Kjersta
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  #12  
Old 06-03-2012, 07:40 PM
Sweet Harrison's mommy Sweet Harrison's mommy is offline
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So so so excited for you all! She looks fantastic
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SUSAN-mom to Harrison, born full-term(11/1/10) with an undiagnosed congenital diaphragmatic hernia (CDH), hypoplastic right lung (caused by hernia), trached at 4 months, g-tube and fundo at 6 weeks. Home in March 2011. Weaned completely off of the vent in July Wearing PMV 24/7, 02 at night, failed decannulation in October. Hoping for better results next time!
www.caringbridge.org/visit/harrisonsnow
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  #13  
Old 06-03-2012, 07:47 PM
IzzyB IzzyB is offline
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Congrats!!!
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  #14  
Old 06-04-2012, 07:51 AM
Felix's Mom Felix's Mom is offline
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That's wonderful news!!!!! I'm so happy for you guys What a relief!
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Son Felix - Born 12/26/10 at 25/6. Excessive damage to vocal chords from ET tube. Trached on 05/24/11 at Sick Kids in Ont. Canada. NG tube (possible pending G-Tube). Superior Vena Cava Syndrome due to blood clot in PICC line.
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  #15  
Old 06-04-2012, 08:18 AM
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Linnae's Mom Linnae's Mom is offline
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Wonderful news! So happy for you...
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JENNIFER-mom to Linton (11), Gideon (7), and Linnae (3-born 5 wks early on 3-22-08), PRS, Trach April 08, VSD-repaired Sept. 08, Ear Tubes-Jan 09, Cleft Palate-repaired May 09 (severe complications with tongue swelling-still ongoing issue), Jaw Distraction-June 09, Jaw Distractor Removal-Nov 09, Adenoidectomy-Feb 10, Reflux-resolved, Discharged from P.T. and O.T...hoping for decan sometime soon! http://www.caringbridge.org/visit/linnaeellis1
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  #16  
Old 06-04-2012, 09:50 PM
chrismclar chrismclar is offline
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hi Alex, I am so happy for you and your family. My son Sean also has pyriform aperture stenosis as you may recall. unfortunately he doesn't have a decann scheduled anytime soon. he is close in age to Sam though, he was born april 13, 2011. We were told he has bilateral cnpas and "a really bad case". On Jun 22nd he is scheduled to have the ENT do a balloon dilation and put stents in (again). hopefully this will do some good. at this point I just hope he can be decanned by next year at this time.

----christine
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  #17  
Old 06-06-2012, 09:54 PM
SammyJo SammyJo is offline
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Quote:
Originally Posted by chrismclar View Post
hi Alex, I am so happy for you and your family. My son Sean also has pyriform aperture stenosis as you may recall. unfortunately he doesn't have a decann scheduled anytime soon. he is close in age to Sam though, he was born april 13, 2011. We were told he has bilateral cnpas and "a really bad case". On Jun 22nd he is scheduled to have the ENT do a balloon dilation and put stents in (again). hopefully this will do some good. at this point I just hope he can be decanned by next year at this time.

----christine
Christine, I have kept up with your posts about your son Sean. We did not do anything to the nose because our Doctors didn't believe it would help at all. Since decann she has struggled to breath at night once she is too dry. I did saline last night which helped a ton. She is also starting Nasonex to reduce any swelling. She has done great with her sats (even better than while trached) and is super happy during the day, so I still think it was the right decision to pull it. Sam's nasal bones were only 4.4 mm at birth which is some of the smallest I have seen in studies, but I am sure there are kids with smaller.

I hope the dilation and stents are successful! It's really nice to not have the trach, but honestly, we had gotten to a good place with trach that if she needed it another year I would have been ok with that too. I would love to keep up with Sean's progress, if you like, you can PM me your email address and we can keep in touch that way as well.
BTW, is Sean gaining weight better with the feeding tube? Weight gain with this condition is tough for most!
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Alex, mom to Samantha born 38 weeks on March 7th, 2011 with Congenital Nasal Pyriform Aperture Stenosis, trached 3.30.11. Grade I Congenital SGS, diagnosed 11/30/11. Also mom to big brother Luke (3).
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  #18  
Old 06-07-2012, 03:20 AM
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glowingpurpleaura glowingpurpleaura is offline
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Yayyyy she's gorgeous too!
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
Mum to an ex 24wk prem now 4 yrs old with Chronic lung disease, chryocid web, immobile vocal cords and vision impaired from ROP. Decanned 10th March 2011 , plan to repeat LTR due to body reabsorbing graph, date unknown
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