TrachKids.org

Hello everyone...I am excited to report that my daughter, Alaya is off the Vent completely as of 3/1/10.  We have an appointment with Pulmonary on April 20th to go forth with the decannulation process. There will be a hospital sleep study, and my daughter will have to have her tonsils removed prior to decannulation, because the Dr. says they are too big, and will odstruct her airway.  I hate the fact that she has to endure yet another surgery, but she's so strong willed and determined, I know she'll be fine.  I'll keep you all informed.

P.S..I am having a very difficult time getting a life insurance policy for my daughter, I've been turned down by the following:
Met Life, Gerber, and Global Life
It is so unfair that no one will issue a policy to me on behalf of my daughter, I'm heart broken, our children are worthy of a policy, but these companies treat them like nothing because of their special medical needs. Can anyone offer any suggestions.
Thanks
Tracey
 

Hello every one, Happy New Year.  It's been a while since my last post, but I wanted to share the good news regarding my daughter Alaya.  We visited her Pulmonary Dr. on January 13th and what great news... She has discontinued the use of oxygen, this was due to Alaya's recent sleep study, which was great.  In 10 weeks we go back and if all things remain the same or even better, the Dr is going to discontinue the use of the vent at night. So that means no more vent yeyyyyyyy!!! After that she says Alaya is basically ready to start the DECANNULATION process.  She says we should have her decannulated by late spring, or early summer.  I can't believe it, I thought we'd be dealing with the trach for at least another year.  My baby is 16 months old and she is making wonderful progress.  she is so strong and determined to beat the odds.  I am so proud of her.  Beleive me when I tell you, that your child will absolutely amaze you.  Stay strong everyone, I'll keep you posted.  God Bless!!

Hi everyone...I am 1 year old as of September 9th. I gotta tell ya, it has not been easy.  I am doing well for the most part, my mommy and one of my Dr.'s think I'm a little on the skinny side.  I like to think that I'm petite.  Anyhoo, the Dr told mommy to start feeding me more formula so that can gain weight.  I wish I was able to taste the formula, but I'm still not swallowing properly, and I have to be taught to eat by mouth.  So, for now they will continue to feed me through my G Tube.  I am learning to sit up on my own, and I love to stand up and try to walk.  I am not able to do this all by myself, so mommy has to hold me up.  But I'll get there. My mommy was so excited the 1st time she saw me sitting up by myself for a full 5 minutes, I love when she gets excited, because she gives me lots of kisses. If she thinks that's something, just wait until I show her that I can stand on my own.  She will have wait a little while for that, cause I'm still learning and working with my P/T.
Well, gotta go, mommy is typing this for me, and she has to get back to work. Bye!! 

Hello everyone,
Hi, it's me Alaya. Usually my mom speaks for me, but I wanted to deliver this news myself, through my mommy's hands of course. Yesterday I saw my pulmonologist, and I'm happy to say that I am now completely off the Vent during the day. I only need it at night when I'm asleep.  But I plan to get rid of that as well, I just need a little more time. I will be seeing a ENT Dr. very soon to have things evaluated and hopefully go on th the next steps toward Vent free living. I'm also excited because my 1 year birthday is coming up, 9/9...can't wait to see what mommy has for me :o)
I will keep you all informed of my latest accomplishments. God loves me, and he loves you too. Keep fighting the fight.

Hi all, just wanted to give a little update on my daughter Alaya who is now 10 months old. Today is July 15 2009 and I am happy to report that Alaya's weening off the Vent is going great. She's off 8 hours daily, and we've started using the Thermovent about two weeks ago. Her Pulmonary Dr. suggested only 5 minutes on Thermovent, but I know my daughter. We started out as the Dr. reccomended, but when I saw how well she tolerated it, we increased the time little by little daily.  We're now up to 4 hours on Thermovent only and then we switch back to compressor. I can't wait til this Vent thing is history.  I believe she only needs it at night while sleeping for now. But of course I have to wait til the Dr. says so.
Take care everyone...and remember that we have the strongest little ones, and they are very blessed.