Passy muir ?

[LeslieML]

His PED is soo amazed at the sounds Chase is making. Screaming thru closed doors and down the hall during blood work, "babbling" to anyone who will listen and talking to the baby in the mirror all the time.
He will lay in bed and make a "hiccup" sound in the morning until someone comes in and then he proceeds to tell you all about his night. Should we ask for a PMV?
I remember being told we would not hear him make noises and it broke my heart, now it breaks my heart to hear him vocalize because it makes me realize how determined he is. When he doesn't do it just right you can see the anger in his face and he balls up his fists, kicks his legs and keeps doing it till he makes some sounds. Do you think he is a candicate?

[cariaad]

Sure sounds like it! It takes good breath control to vocalize around the trach with no speaking valve. Id try to order one asap. Deb

[Triciasmom]

When Patricia was trached, we were prepared for her to not be able to speak, and for it to take weeks before communication was smooth. Well....within 24 hours Patricia was not only communicating clearly with the nurses, but she was talking clearly! Because of her airway issues, a PMV was never good, but she has mastered covering her HME to force the air up when needed. Her vocalization has always been better than "expected" with a trach. I think sometimes they tell us how bad it will be, just to cover their backsides.


I would check on a PMV for Chase, and if you aren't already seeing one, maybe ask for a speech therapist or at least a speech evaluation.

Godspeed

Clare

[indiemum]

I definetly would. Indie was born April 2002 and the following April we started with the PMV. It literally opened doors for her. Our little girl who doc's told us may not be able to speak (vocal chord parlaysis) was just assessed at a 36mo level for speech and she is not yet 2.5yrs. She sounds like a "normal" kid (sorry, I hate to use that term), it really allows her to define her pernunciation(sp?). If you love his voice now, just wait for the PMV.Good Luck, it is very exciting.

Kelly

[Ayden's Dad]

There was some debate as to whether or not Ayden should even try a PMV. Given that she was just under two months old (now approaching the months) there was one group at CHEO that figured there really was no point, I guess they didn’t miss even the sound of her cry. Our speech pathologist thought differently. Ayden, at less than three months, not only tolerates the PMV but smiles and feeds with it, maintains high saturation and reasonable heart rate (perhaps around the 150s) and coos incessantly http://www.tracheostomy.com/iB_html/non-cgi/emoticons/wow.gif . She wears it for up to 4.5 hours / day and has no problems falling asleep with it on (at which point we remove it). The only basis for us pushing for the PMV was a brief, barely audible squeak which emerged from her one day in NICU. It sounds to me that you not only have a candidate on your hands, but most likely someone who could be the poster child.

Derek

[Melisande]

Hearing their voice is a beautiful sound, isn't it? I even don't mind crying. He looks so cute when he gets mad especially. Donovan was making noises around his trach too before we started with the PMV....not as much as your baby. What I found was it takes less effort for D to make noise with the PMV. He was having to make quite a good effort and force air around the trach to make the noises he was making. Now, they just flow out just like you or I with the PMV. It's pretty cool. Makes it much easier for them to make noises as far as I can tell. He loves it. Can't shut him up now! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/tongue.gif

[Laurie]

I would definitely use the Passy-Muir. Due to a granuloma in his airway, Evan could not tolerate the PMV or speak around his trach at all for about the last year, and he did not do much before the granuloma got bad either. His first really good sounds have been since decannulation, and we are really at square one with speech as a result, even though he is 2.5 years old. So, any way to encourage experimentation with sound, I would go for it.