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Lillie Brooke has her decanulation scheduled for September 8,2011! I can't believe this long adventure is coming to an end!I am excited and scared at the same time! I don't know how lillie is going to react without her "necklace" but I can only hope that the new adventure we have coming our way goes well!

Lillie Brooke, now three years old, passed her sleep study beautifully and is now being put on the or schedule to have one last broncoscopy done and perform her decanulation! I can't believe the time has finally come! I'm unsure how to react, but I'm sure it will be a wonderful experience! I'll finally be able to hear her voice for the first time!

Lillie had an ENT appointment yesterday to do yet another bronchoscopy. Only this time after it was over we actually received a little good news! Her Dr. said that her airway was open more than it ever has been and she only had a small peice of scar tissue under her vocal cords that he easily removed! This has been the best news that we have received in over a year!

Well,my daughter Lillie had her last stent removed and her ENT has now decided not to do anything else to her for about six months to let her grow a little so it looks like she'll have her trach another year or so. Her body just doesn't want to do what it needs to do to remove it.

Well, my Lillie is now 2 years old and still no luck in removing her trach. :(  I have became very discouraged now because when she was born her ENT said she would only need the trach for about a year and now a year later and about 35 surgeries there just doesn't seem to be much success in removing it. Every time I think things are going well yet another set back happens.

Well, it's June 10th and Lillie is about to go into her 25th surgery :( After this surgery her Dr. is going to try to put a passey muir valve on her which is exciting and scary at the same time. She's about to turn two in a few weeks and I have never heard her voice,but,at the same time I don't know anything about this valve except the info her Dr. gave me.

Hello, everyone! I am at a loss...my baby,Lillie Brooke is on her long road to having her trach removed and now that she is on her 23rd surgery with little results I just don't know how to take this anymore. She's done alright so far..I mean with her ups and downs with the process,but, I just wish someone would have told me in the begining how hard it was to remove her trach!!!

Well, Lillie's 1st birthday has passed by and her trach still has yet to be removed. She sees her ENT again in November and her whole family is praying that's when the DR. will say it's time. We want to hear her speak more than anything and now that Lillies' 15 months old now we can only hope we'll hear her beautiful voice soon.