Talking

[Shari]

I don't know if it's the time of year or that my little boy is getting older, but the silence is really starting to bother me. Jacob is almost 2 and barely makes a sound at all, on or off the vent. I'm working on signing with him, but I can tell that he wants to communicate sometimes and just doesn't have a way. Did anyone else go though this and then their child get a voice later? He hasn't been able to tolerate the PMV at all.
-Shari

[Olga]

Grace was completely silent for a year, then her airway began to open up a little last September and she could squeak. Now she can make as much noise as a child without a trachy and is speaking really well. She doesn't use a PMV - it has never been suggested that she does. She simply places her chin over her trachy to make a sound, although she can now make a noise without even having to to that.
I do realise that all the children on this website have trachys for different reasons and I just wanted to illustrate that you must never give up hope. I really thought that we wouldn't be able to hear Grace until the trachy came out.
Also, don't give up on communicating with your child because it is astonishing how much they can take in. Grace has never ceased to surprise us with what she knows. At 2 1/2 she can recite quite a few nursery rhymes.
I remember being envious of other people who had babies that cried loudly, but that is now behind us.
I wish you all the best. Good luck Olga

[christyw]

Gaithy can make all the noise she wants, more so while on the vent, but can make some while off. Still, she only knows "Da Da," and she is over two years old. I've seen Jacob sign, and it IMPRESSES me so much. I WISH that Gaithy were able to do that, which is kind of the opposite of what Shari is wanting. I guess the ultimate situation for our kids with trachs is that they could do both (sign and speak) so that they could optimize their communication abilities. Gaithy only communicates with the word "da-da" (which she only says straight to my husband), and with gestures--like reaching up for someone to take her, bouncing up and down when a therapist comes in with a big exercise ball (she knows that means she gets to bounce&#33, and other stuff like that - no rocket science yet!! I find myself thinking that she just isn't smart enough to sign. That's a terrible thing to say, but it seems to be true - BUT then again, we don't really work on it, and I know it takes a lot of work, as some have told me this. Honestly, it is all quite frustrating, as we all know! Gaithy was without voice for most of her life until this summer. She had some granulation tissue removed and we thought that would cure it all. Still, it was a few more months before the voice came loud and clear. So, we were very grateful to finally have it!! Anyway, this doesn't really answer Shari's question, but only attempts to relate in some way. I'm hoping Jacob will vocalize soon as well!!

christy