TrachKids.org

Hello everyone, after 2yrs,10months,29 days...Alaya was DECANNULATED on 9/29/11.  She is doing GREAT. she loves to sing and laugh, she just loves the ease of being more vocal.  I am so thrilled, this has been a very long journey and very very difficult at times.  Now it's a new chapter and we are gearing up for nothing but the best.  I wish you all blessings.  This site has helped me a great deal during Our time with "the necklace"  Take care everyone, talk to you all soon.

Hello everyone, the time is so near I can hardly type this update, I'm so excited. My daughter Alaya will be 3yrs. old on Friday the 9th.  she is scheduled to be admitted on the 27th for the removal of granuloma tissue, after which, her Trach will be down sized to 3.0, she will be monitored overnight, and if all goes well she will be decannulated the next morning on the 28th of September.  One week prior to th 27th we must downsize her Trach to 3.5, she will wear that for one week, before we go to the hospital.  I am so excited and nervous.  I am praying that from here on she stays healthy, because if she get so much as a sniffle, the whole thing is called off until next spring.  My baby is ready, and so am I.  I wll let you all know how this turns out.  God Bless!!

Hello TK family...It's been a while since my las post.  Alaya has finally had her tonsil and adenoids removed on April 15th,2011.  We have a visit with Pulmonary in July to determine if we should try decannulation.  I am soooo hoping that we can go forth and at the very least try.  The concern is due to Alaya undiagnosed muscle disorder, which by the way seems to only now exist from the neck up.  My daughter has never closed her mouth since birth and she does not eat anything by mouth.  She can move her jaw up and down, and say da da, and na na. She does not smile and when she laughs it sounds weak due to the open mouth posture.  Often times she will put her tounge in between her teeth and gently bite down. I assume it's to rest her jaw muscle.  Is anyone familiar with this? and what it may be?  She on the other hand is very very strong from the neck down, she walks, runs, jumps, climbs. We just can't figure out what's going on with her facial muscles.  I wonder if it's anything to do wiht the part of the brain that controls muscle in the face? Well, I'll keep you all posted after we visit Pulmonary on July 12th. Take care everyone and God Bless our little ones.  

Hello all...
Alaya came down with a cold a week before her scheduled tonsillectomy. She must be 100% to have that surgery. She is doing much better, but still not 100%.  I am hoping to proceed by 10/30.  It seems the closer we get to decannulatin the farther we really are.  I won't do anything before my baby is ready, no matter how bad I want it.  I'm just so frustrated, because I know typically doctors don't like to decannulate during the fall and winter months.  We may have to wait until spring.
I'll keep you all posted.  God Bless!!

Tracey (Alaya's MOm)

Hello all:
Alaya is having her tonsils removed on 9/24, due to the size of her tonsil being too big, they must be removed prior to decannulation. after she heals from that, they will check her lungs and airway to make sure she set to go, then her trach will be downsized to a 3.5 and she'll be observed and then downsized again to 3.0, if successful, she'll be dacannulated.  We could be decannulated before Thanksgiving, I am so excited and scared at the same time. I want this so bad for her that I can't believe we are so near to that reality.  I'll keep you all posted.
Thanks
Alaya's Mom